Re: Neurofeedback questions

[Guest guest]

dear cyle, excellent post!!!

> > > > >

> > > > >

> > > > > Hi,

> > > > >

> > > > >

> > > > >

> > > > > First, please excuse my poor English †" it is

> not my mother tongue.

> > > > >

> > > > >

> > > > >

> > > > > My 13 years old son suffers from 100% miso symptoms with 24/7

> rage when

> > > > > he is with us (parents and his sister). He spends his days and

> nights

> > > > > alone in his room. Most (if not all) of the messages in this

> forum

> > > > > describe our life….All of this is

> accompanied with depression, and

> > > > > OCD diagnosis. We have tried 5 different OCD medications, 2

> different

> > > > > psychological treatments (one was CBT). None of these treatments

> helped.

> > > > >

> > > > > He started Neurofeedback, and done 21 sessions of 30 minutes

> each †"

> > > > > twice a week. The Neurofeedback therapist says that she sees

> progress in

> > > > > the measured brain waves levels, and that he is close to levels

> that we

> > > > > can expect to see the changes (at least from the aspect of

> depression

> > > > > †" they do not have experience with

> miso…).

> > > > >

> > > > > I read messages from Clyle, Heidi and Bernadette on

> Neurofeedback

> > > > > progress and success. I wonder if I can ask to get information

> on

> > > > > Neurofeedback treatments that show progress. I think that

> sharing

> > > > > information may help all of us, and I intend to share

> information in

> > > > > case of success (and in failure case as

> well…)

> > > > >

> > > > > My questions...:

> > > > >

> > > > > - What are the protocols of the Neurofeedback treatment

> †" what

> > > > > brainwaves are trained? For example †" raising

> the levels of Alpha

> > > > > while reducing theta brainwaves levels, training beta, or SMR?

> These are

> > > > > just example, and I would like to get this information in order

> to share

> > > > > it with my son's therapist.

> > > > >

> > > > > †" What is the location of the electrode?

> †" I think that this is

> > > > > also important.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I hope that it is OK asking these questions. I asked my son's

> > > > > therapist to contact Clyle's practitioner as Clyle suggested. I

> want

> > > > > to get as much information as possible in order to help my son

> to get

> > > > > out of his daily suffering, and back to normal life as he

> deserves.

> > > > >

> > > > >

> > > > >

> > > > > Thank you!

> > > > >

> > > > > Art

> > > > >

> > > >

> > >

> >

>

[Guest guest]

dear cyle, excellent post!!!

> > > > >

> > > > >

> > > > > Hi,

> > > > >

> > > > >

> > > > >

> > > > > First, please excuse my poor English †" it is

> not my mother tongue.

> > > > >

> > > > >

> > > > >

> > > > > My 13 years old son suffers from 100% miso symptoms with 24/7

> rage when

> > > > > he is with us (parents and his sister). He spends his days and

> nights

> > > > > alone in his room. Most (if not all) of the messages in this

> forum

> > > > > describe our life….All of this is

> accompanied with depression, and

> > > > > OCD diagnosis. We have tried 5 different OCD medications, 2

> different

> > > > > psychological treatments (one was CBT). None of these treatments

> helped.

> > > > >

> > > > > He started Neurofeedback, and done 21 sessions of 30 minutes

> each †"

> > > > > twice a week. The Neurofeedback therapist says that she sees

> progress in

> > > > > the measured brain waves levels, and that he is close to levels

> that we

> > > > > can expect to see the changes (at least from the aspect of

> depression

> > > > > †" they do not have experience with

> miso…).

> > > > >

> > > > > I read messages from Clyle, Heidi and Bernadette on

> Neurofeedback

> > > > > progress and success. I wonder if I can ask to get information

> on

> > > > > Neurofeedback treatments that show progress. I think that

> sharing

> > > > > information may help all of us, and I intend to share

> information in

> > > > > case of success (and in failure case as

> well…)

> > > > >

> > > > > My questions...:

> > > > >

> > > > > - What are the protocols of the Neurofeedback treatment

> †" what

> > > > > brainwaves are trained? For example †" raising

> the levels of Alpha

> > > > > while reducing theta brainwaves levels, training beta, or SMR?

> These are

> > > > > just example, and I would like to get this information in order

> to share

> > > > > it with my son's therapist.

> > > > >

> > > > > †" What is the location of the electrode?

> †" I think that this is

> > > > > also important.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I hope that it is OK asking these questions. I asked my son's

> > > > > therapist to contact Clyle's practitioner as Clyle suggested. I

> want

> > > > > to get as much information as possible in order to help my son

> to get

> > > > > out of his daily suffering, and back to normal life as he

> deserves.

> > > > >

> > > > >

> > > > >

> > > > > Thank you!

> > > > >

> > > > > Art

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Clyle,I will forever be grateful you posted your experience about NFB, especially since you posted it because of . You saved her life and I can't thank you enough!!!!! I will pray for your wife and your whole family. You are a hero to me! Much thanks,Bernadette To:

Soundsensitivity Sent: Tuesday, July 24, 2012 1:14 PM Subject: Re: Neurofeedback questions

Liesa, Audrey, , & Bernadette … Thank you for your posts in reply to Peach's attack and in regards to my deleted post. It is because of so many people like the four of you that I take time to post in an attempt to help others. Peach … It is because of attacks such as yours that I do not enjoy taking part in online discussions. As you have shown, online forums can lead to attacks such as yours, referring to me as "mean," "so stingy with information," and "weirdly long notes." By contrast, I did not attack Dr. . In fact although we disagree to such a large degree, I stated in my March 9th post that "I appreciate that Dr. J provides this forum that can be used in helping others with this condition." I can respect Dr. J's right to her opinions, and I can respect her right to disagree with mine, but I have absolutely no respect for her decision to delete my March 9th post! People had re-posted this entry of mine and had made statements as it being the most beneficial &

hopeful post they had read! Although as Moderator she has the right to delete my post … but what gives her the right to delete a message of NFB successes that just may avert the next attempted suicide, self-injury, or distraught feelings of hopelessness? , you have every right to be upset … Dr. J has not yet replied to as why she deleted my post. My original post was #20318 on May 1, 2011. I received interest at that time from just two respondents. Due to this I felt it better to wait several months before again posting so that I could truly see if this would be long-lasting, and hopefully have more improvement to the point where more people would be interested. It was actually just 8 months later, on January 7, 2012 that I again posted #24453. After reading of the situation with Bernadette's daughter, I just could not wait any longer. I had realized so much improvement by that time that I felt I needed to reach out to help and others. I know this is going to be lengthy, but the following are my other posts. I would suggest everyone make a copy of these along with the two listed above. Jan. 8 #24463 Jan. 14 #26662Jan. 9 #24497 Jan.

18 #24717Jan. 10 #24561 Feb. 16 #25081Jan. 11 #24587 Feb.

19 #25129Jan. 12 #24612 March 9 DELETED POSTJan. 14 #24660 July

22 #28152Jan. 14 #24661 July 24 This post Please read all of them and it will be realized by most that attacks are unwarranted. Peach, you say, "He has not given us an update. Have the results held for the last five months? He does not say." You are doing nothing more than repeating Dr. J's often said remarks regarding placebos and as to whether this will be long lasting. Yet I have pointed out several times in my posts that, "The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later." Heidi has also posted with similar comments as to

how the NFB improvements are permanent. You said in your post that you give credence to what Heidi says, so shouldn't that answer your criticism as to "Have the results held for the last five months?" Again, please re-read all the posts; I am accused of being stingy with information and "mean" for not answering further questions or giving ongoing information. I believe I have answered every possible question one may think of when it comes to NFB: I have provided the contact info for my NFB practitioner so other NFB practitioners may contact him. I do not get into the conversations and often asked questions regarding protocol, what areas of the brain are being treated, whether alpha needs to be higher, frequencies, or QEEG readings. This is because my answer has already been posted several times … "All brains are different!" … There is no guarantee that my treatment is the protocol for the next person. I have pointed out that although both my son and I have suffered with Misophonia as well as OCD, that our QEEG's were totally different and our practitioner's method of conducting sessions for us differ completely. I have also pointed out that NFB may not work for everybody; again, all brains are different. But on the flip side, if one fails to see improvement with NFB, it may not be the failure of NFB, but instead possibly the

particular practitioner or method that needs changed. I have stated that is my practitioner's opinion, and mine, that this is a variation or `subset' of OCD. For this I have been challenged by others. That is fine, I respect their opinions that it is not OCD, and possibly it is not, as again it is just our opinion. We all agree that we don't care about the `label,' but rather the remedy. Virtually any question that has been asked of NFB is answered in my posts. As far as not monitoring my Yahoo mail account … It was getting quite repetitious to attempt to answer the same questions over & over … questions that had already been answered in my posts. To those that sent an email of thanks or telling of their successes, I apologize for missing. Just how many more success stories does one feel I should post? I have given so many examples of how NFB has improved our lives for my son, my daughter, and me. I also have made my case with my posts that it was time for others to try NFB as only thru more success stories from others would we gain the credibility and assurances that NFB was truly the answer for so many. You are now reading of those successes by several others. My lack of participating recently is due to a couple reasons that I would take extreme offense to if not understood: First of all is the knowledge we all have that new triggers may arise just by reading those of others. I told in a post of both my practitioner and my wife, neither who has Misophonia, that both acknowledge they now notice how people eat and chew gum, and although they are not triggered with anger, that they can find it obnoxious where before they just didn't notice. My son and I have worked hard thru several sessions to retrain our brains. It makes little sense for us, or others that reach the level of success we are enjoying, to risk that progress by subjecting ourselves to ongoing unlimited conversations regarding Misophonia. I have considerable respect for Heidi with her taking a lead role in being not only a face for Misophonia, but with her research and experience in sharing her NFB

successes. Heidi says that she is at a 75% improvement level and for that I am extremely happy for her. My advice for you, Heidi, would be to heed what I have written in this paragraph and at some point pull back from living this on a daily basis with this site. You reach a level, that although improvements with NFB are permanent, the ongoing continual suggestive nature of this is too much to risk your improvement upon as I point out with the example of Dr. Lyle and my wife above. It will be time for others that are beginning to realize their successes with NFB to step up and share their stories so this solution can continue to be shared with other people. This is in no way abandoning others, as previous posts can always be referred to, but rather what my practitioner, Dr. Lyle, and I believe is an important phenomena to understand in enjoying full relief for

this condition. Peach, I hope you now understand due to this paragraph why I am "weirdly long" with my posts … it is not my intention to post often, so I cover it all at once! It is the reason I was not monitoring this site until receiving an email from a friend that I keep in touch with, another participant on this site, telling me of how my posts were still making a difference, so I thought I'd enjoy taking a couple looks. It was only due to the deletion of my post that caused me to become active again to denounce this injustice and disservice to sufferers! It is my intention, for the same reason stated here, that I will again discontinue monitoring or posting to this site. If there is something that needs to be brought to my attention, or an instance where I can help someone, my friend will certainly notify me. Otherwise I feel that if people are

directed to this post so they can see the listing of all 16 of my posts, they will have as much information as I can possibly give them. My second reason points to why I do not generally take part in online discussions or social media to a major extent due to the attacks that can be leveled anonymously by those that do not know me or my family. Apparently there are a lot of people that share this view as this site reports to have 3,270 members, but very few participate with posts, which is probably a wise decision. My wife just recently underwent an extremely critical 4 hour surgery at the Mayo Clinic / St. 's Hospital in Rochester, MN. We thank God that the procedure was totally successful but she faced the prospect of both brain damage as well as possible facial paralysis. So for the vast majority of reasonable people on this site, thank you for understanding that my main obligation is for my wife's health & recovery, the continued

improvement of my son's Misophonia, and the continued improvement of my daughter's ADD … not in "updates" to re-answer material I have already fully explained that a very small minority apparently feel I owe them. For those that are sincere about the prospects of what NFB may do for them … I have never reported myself as being 100% "cured." I have said that my wife has expressed that at times. No one knows better as she knows me well. She has been the most loving and understanding partner for 26 years while I have dealt with this condition. The last I stated was 90-95% improvement. Maybe I could take that up a few notches. The only thing that seems to bother me at all is the repetitive movement of my wife's arm when we are walking. It does not anger me, it is just something I have noticed bothers me at times, the repetitive movement. I have posted about this before, certainly not audiological! My being bothered with food

noises, which was major at one time, is non-existent. The most major for me was always gum. I generally do not even notice now, except in the case when someone is extremely obnoxious with the manner in which they are chewing. I do not get "triggered," anxious, or angry at all, but rather do not like as I "wonder" if it could bother me again. I want to point out though that I am referring to the level of obnoxiousness that even non-Misophonia people would find offensive. I was at a meeting recently with 8 others sitting at a conference table with one person on a conference call. There was frequent squeaking or feedback from the phone that was very apparent in bothering and annoying the other 8 people present, to the point that they finally cut off the call. I just sat there smiling as it didn't bother me at all.

Am I cured? I don't know, I think I'll leave it at 97-98%. How's that for 17 months and holding? But then again, maybe it is 100% … perhaps the problem with my wife's repetitive movements pertains to my OCD? I did have extreme OCD which for the most part has disappeared. I do have one new piece of information to pass along as far as improvement and success. In fact, rather than casting aspersions on NFB, Dr. J., you may want to embrace it for what it can do for tinnitus, which I know you deal with. At one point my tinnitus was very bad! A gentleman I am familiar with in our city committed suicide due to his inability to deal with his tinnitus, which all "approved" methods and "accepted" doctors had failed to alleviate. I never contemplated suicide, but I was alarmed and wondered how I was going to be able to live with my ever-increasing level of tinnitus. I read a recent post by Heidi as to how NFB had shown success in alleviating tinnitus, and I thought to myself, "Wow, I didn't even realize it but I don't even notice my tinnitus

anymore." I can report that I am not bothered by tinnitus anymore, and it wasn't even a benefit I was looking for with NFB! So much for the placebo effect! As for our son, the last I reported I think I said he was 75-80% improved … I could look it up but I am getting so "weirdly long" that I am even wearing myself out. I would put him a little higher than that overall. He would hit the 90% plus with others, but with his sister, and my wife & me, I would leave him at the 75-80%. We all realize that it is those closest to us that are our biggest triggers. So, you want an overall score … I'd say 85%. It is a dual problem with teenagers and tougher to evaluate as some of their anger is normal with their dealing with their hormones. Add to this that our son had even more extreme OCD than I did … so much of it improved, but still some there to deal with. As far as our little 10-year old with her ADD. It brings tears of joy to my wife's and my eyes when we now realize that she has a real opportunity at life. Due to her ADD, at one point we were overwhelmed with fear & sadness as to her prospects at life as she fell further & further behind her peers. Due to the last 14 months, with 133 NFB sessions, she has not caught up yet but we are joyfully optimistic that she will actually surpass her peers. It is simply amazing that "medical professionals" can continue to discount NFB with all its proven successes, in particular with ADD. Our little girl had absolutely zero understanding of why she had to go to Dr. Lyle, something she still dislikes doing … and after 14 months, again, hardly a placebo effect!

I have acknowledged before that our family is fortunate in that the cost of NFB has not been too great of a burden for us … so we can continue to strive for 100%. In fact, my wife, the only "normal" one in our family, will start NFB after complete recovery from her surgery just to help with focus, mental abilities, and stress reduction that can hamper one as they age. Think she may have a little stress with having had to cope with two of us with Misophonia, a daughter with ADD, my bout with an extremely deadly case of esophageal cancer, and now her condition that could have resulted in brain damage or facial paralysis? The important thing for those of you that have sincere interest in this is that I reported that both my son and I realized 60-70% improvement within our first 40 sessions. How much better

would your life be at that level? Our initial 40 sessions along with a beginning and ending QEEG was $4,100, which I realize is a burden for so many and to which I am empathetic. Parents, what relief would it be for you if your child saw improvement of 60-70%? That's it … As I've pointed out, I won't post often. It is time to bring this back to what started this post, besides answering Peach's attack on me, and that is my post that was deleted by Dr. J. In a recent post Emma asked, "I mean just what would Dr. gain from denying us a treatment that would help us???" Emma, I have my own opinion regarding that question, but I feel it is best left up to Dr. J. to answer for herself. I started my prior post with the simple question … "Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine?" Clyle53

> > > >> > > > > > > > Hi,> > > > >

> > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > > he is with us (parents and his sister). He spends his days and nights> > > > alone in his room. Most (if not all) of the messages in this forum> > > > describe our life….All of this is accompanied with depression, and> > > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> >

> > twice a week. The Neurofeedback therapist says that she sees progress in> > > > the measured brain waves levels, and that he is close to levels that we> > > > can expect to see the changes (at least from the aspect of depression> > > > â€" they do not have experience with miso…).> > > > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > > progress and success. I wonder if I can ask to get information on> > > > Neurofeedback treatments that show progress. I think that sharing> > > > information may help all of us, and I intend to share information in> > > > case of success (and in failure case as well…)> > > > > > > > My questions...:> > > >

> > > > - What are the protocols of the Neurofeedback treatment â€" what> > > > brainwaves are trained? For example â€" raising the levels of Alpha> > > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > > just example, and I would like to get this information in order to share> > > > it with my son's therapist.> > > > > > > > â€" What is the location of the electrode? â€" I think that this is> > > > also important.> > > > > > > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > > to get as

much information as possible in order to help my son to get> > > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > > > > > Thank you!> > > > > > > > Art> > > >> > >> >>

[Guest guest]

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

I think such a group is a great idea, but I would like to make the suggestion that we use Google groups: I think it's more modern, cleaner, and better maintained than Yahoo groups. Of course, using Google groups would create an extra hassle in the short-term for the people currently on this group, who obviously all have Yahoo accounts already. To:

"Soundsensitivity " <Soundsensitivity > Sent: Tuesday, July 24, 2012 12:19 PM Subject: Re: Re: Neurofeedback questions

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where

Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying

Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I

will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

I think such a group is a great idea, but I would like to make the suggestion that we use Google groups: I think it's more modern, cleaner, and better maintained than Yahoo groups. Of course, using Google groups would create an extra hassle in the short-term for the people currently on this group, who obviously all have Yahoo accounts already. To:

"Soundsensitivity " <Soundsensitivity > Sent: Tuesday, July 24, 2012 12:19 PM Subject: Re: Re: Neurofeedback questions

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where

Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying

Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I

will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

So Dr J are you just going to keep deleting our posts no matter the content? Sent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 12:19 PM, Heidi Salerno wrote:

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

So Dr J are you just going to keep deleting our posts no matter the content? Sent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 12:19 PM, Heidi Salerno wrote:

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

Before we all hang Dr J out to dry I have to say that I am on another yahoogroup where messages have disappeared for no reason. A few weeks ago I lost access to this group (possibly because my account had been hacked and was sending out spam, but maybe not). Yahoogroups is not perfect, and this could be down to glitches, although it does looks a bit of a coincidence.

NFB may well be a good way to approach the issue, but it might not work for everybody and it might have side-effects that we don't know about yet. Anything that is tried should be posted on here and allowed to stay unless it is clearly inappropriate or unhelpful.

Debate needs to continue: if messages have been deleted then a clear reason should be given (at the very least to the person who posted the message); if it is a glitch then we need to allow people to respond.

,

Hull

To: Soundsensitivity From: heidi@...Date: Tue, 24 Jul 2012 13:24:29 -0700Subject: Re: Re: Neurofeedback questions

So Dr J are you just going to keep deleting our posts no matter the content?

Sent from my iPhone

Real Results. Real science.

Age-Defying Skin.

www.heidisalerno.nerium.com

Happy Dancing!

www.jitterbal.com

I'm speechless.

....

There's no excuse for deleting those posts. None.

Your email settings: Individual Email|Traditional Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch to Fully Featured Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe

[Guest guest]

Before we all hang Dr J out to dry I have to say that I am on another yahoogroup where messages have disappeared for no reason. A few weeks ago I lost access to this group (possibly because my account had been hacked and was sending out spam, but maybe not). Yahoogroups is not perfect, and this could be down to glitches, although it does looks a bit of a coincidence.

NFB may well be a good way to approach the issue, but it might not work for everybody and it might have side-effects that we don't know about yet. Anything that is tried should be posted on here and allowed to stay unless it is clearly inappropriate or unhelpful.

Debate needs to continue: if messages have been deleted then a clear reason should be given (at the very least to the person who posted the message); if it is a glitch then we need to allow people to respond.

,

Hull

To: Soundsensitivity From: heidi@...Date: Tue, 24 Jul 2012 13:24:29 -0700Subject: Re: Re: Neurofeedback questions

So Dr J are you just going to keep deleting our posts no matter the content?

Sent from my iPhone

Real Results. Real science.

Age-Defying Skin.

www.heidisalerno.nerium.com

Happy Dancing!

www.jitterbal.com

I'm speechless.

....

There's no excuse for deleting those posts. None.

Your email settings: Individual Email|Traditional Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch to Fully Featured Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe

[Guest guest]

Yes. Please please let I'd know if there's a glitch. Sent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 1:58 PM, Abraham wrote:

Before we all hang Dr J out to dry I have to say that I am on another yahoogroup where messages have disappeared for no reason. A few weeks ago I lost access to this group (possibly because my account had been hacked and was sending out spam, but maybe not). Yahoogroups is not perfect, and this could be down to glitches, although it does looks a bit of a coincidence.

NFB may well be a good way to approach the issue, but it might not work for everybody and it might have side-effects that we don't know about yet. Anything that is tried should be posted on here and allowed to stay unless it is clearly inappropriate or unhelpful.

Debate needs to continue: if messages have been deleted then a clear reason should be given (at the very least to the person who posted the message); if it is a glitch then we need to allow people to respond.

,

Hull

To: Soundsensitivity From: heidi@...Date: Tue, 24 Jul 2012 13:24:29 -0700Subject: Re: Re: Neurofeedback questions

So Dr J are you just going to keep deleting our posts no matter the content?

Sent from my iPhone

Real Results. Real science.

Age-Defying Skin.

www.heidisalerno.nerium.com

Happy Dancing!

www.jitterbal.com

I'm speechless.

....

There's no excuse for deleting those posts. None.

Your email settings: Individual Email|Traditional Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch to Fully Featured Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe

[Guest guest]

Yes. Please please let I'd know if there's a glitch. Sent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 1:58 PM, Abraham wrote:

Before we all hang Dr J out to dry I have to say that I am on another yahoogroup where messages have disappeared for no reason. A few weeks ago I lost access to this group (possibly because my account had been hacked and was sending out spam, but maybe not). Yahoogroups is not perfect, and this could be down to glitches, although it does looks a bit of a coincidence.

NFB may well be a good way to approach the issue, but it might not work for everybody and it might have side-effects that we don't know about yet. Anything that is tried should be posted on here and allowed to stay unless it is clearly inappropriate or unhelpful.

Debate needs to continue: if messages have been deleted then a clear reason should be given (at the very least to the person who posted the message); if it is a glitch then we need to allow people to respond.

,

Hull

To: Soundsensitivity From: heidi@...Date: Tue, 24 Jul 2012 13:24:29 -0700Subject: Re: Re: Neurofeedback questions

So Dr J are you just going to keep deleting our posts no matter the content?

Sent from my iPhone

Real Results. Real science.

Age-Defying Skin.

www.heidisalerno.nerium.com

Happy Dancing!

www.jitterbal.com

I'm speechless.

....

There's no excuse for deleting those posts. None.

Your email settings: Individual Email|Traditional Change settings via the Web (Yahoo! ID required) Change settings via email: Switch delivery to Daily Digest | Switch to Fully Featured Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe

[Guest guest]

Great idea Chris. I do think google is a better tool. All people have to do is get a gmail account. Here is is:http://groups.google.com/group/misophonia-support?hl=enHeidiSent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 1:19 PM, Misophonia Sufferer wrote:

I think such a group is a great idea, but I would like to make the suggestion that we use Google groups: I think it's more modern, cleaner, and better maintained than Yahoo groups. Of course, using Google groups would create an extra hassle in the short-term for the people currently on this group, who obviously all have Yahoo accounts already. To:

"Soundsensitivity " <Soundsensitivity > Sent: Tuesday, July 24, 2012 12:19 PM Subject: Re: Re: Neurofeedback questions

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where

Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying

Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I

will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

Great idea Chris. I do think google is a better tool. All people have to do is get a gmail account. Here is is:http://groups.google.com/group/misophonia-support?hl=enHeidiSent from my iPhoneReal Results. Real science. Age-Defying Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 1:19 PM, Misophonia Sufferer wrote:

I think such a group is a great idea, but I would like to make the suggestion that we use Google groups: I think it's more modern, cleaner, and better maintained than Yahoo groups. Of course, using Google groups would create an extra hassle in the short-term for the people currently on this group, who obviously all have Yahoo accounts already. To:

"Soundsensitivity " <Soundsensitivity > Sent: Tuesday, July 24, 2012 12:19 PM Subject: Re: Re: Neurofeedback questions

I'm speechless. ...There's no excuse for deleting those posts. None. ...I was one of the people who contacted Clye over a year ago privately so excited about his NFB. I told him I would save up my $ and try it to not only to find relief for myself but so that he wasn't alone in writing about NFB and if Intoo had success then that would give other's hope. I spoke at length to Bernadette about getting to NFB and encouraged her to read all of Cyle's post and was so HAPPY when agreed to do it and we both started at the same time. I have been incredibly grateful to Cyle for giving us all this information and sharing he and his son's and daughter's personalNFB journey. Without him I would not be in such a wonderful place in life where

Misophonia is only a disturbance here and there and not a big part of my life. I know and Bernadette would not be on their way to normalcy, in fact would be where she was in December which was heart breaking. I know it was hard for Cyle to have so many people ignore what he was telling us. But the message finally got through and many of us our now on our own NFB journey and have Clye to thank for it. To delete that which has improved our lives is unconscionable. Perhaps Dr is right, it is time for a Misophonia list where NFB and other methodologies can be openly discussed and practioners welcomed: "Misophonia" yahoo discussion group, feel free to join. HeidiSent from my iPhoneReal Results. Real science. Age-Defying

Skin. www.heidisalerno.nerium.comHappy Dancing!www.jitterbal.comOn Jul 24, 2012, at 9:53 AM, Bernadette Salvatore wrote:

Oh my goodness, you are right, Clyle. The posts have been deleted. My posts and 's posts have also been deleted. What a sad day for me, is all I can say. I don't mean to sound childish but I guess my words, Clyle's and 's overall improvement does not mean anything. We been kicked around enough and I'm actually sitting here crying feeling so sad. It makes me feel like the times we have been laughed at, kicked out of offices and it's bringing back too many painful memories. I guess this is not a site for hope, like I thought. I will carry on helping my daughter and still hoping but I guess I can't do it here. I guess this is only a place to vent. Yes misophonia is horrible....how many times can we write that? I

will continue to read these boards but

that's about it. No need for anyone to respond, I will continue to keep in touch with all of you privately. Again I don't mean to sound childish but I'm just not going to waste my time writing if it's going to be deleted. P.S. offered me some food yesterday to try. She also made me breakfast in bed this morning, another huge improvement. (Hope this doesn't get deleted. ) To: Soundsensitivity Sent: Sunday, July 22, 2012 8:50 PM Subject: Re: Neurofeedback questions

Dr. J. … I ask you, if you have the best interests of Misophonia sufferers in mind, then why did you delete a previous post of mine? I have stated in past posts that I would not be commenting often, and in fact was not even monitoring this site. But last Monday another person that follows this site emailed me and said, "I notice members are referring to your personal story and re-reading your advice … you're still making a difference." So I looked at this site and was very pleased that besides several people commenting on my January post #24453, that 3 different people had repasted & copied another entry that I had posted on March 9th. Two of the people even commented as to how this was the most beneficial and encouraging post they had ever read in

regards to Misophonia. Then today I looked at the site again, and to my disgust found that not only was the reposts and comments of these 3 people deleted, but also my original post from March 9th has been removed! Heidi, Adah, and Bernadette covered some very good points that I hope you address. Then I hope you will explain as to why you deleted my post? I apologize to several of you that have emailed my Yahoo email address over the last few months. I have not monitored this email address until looking at it today. I will attempt to answer questions some of you asked … and in the future will monitor as it may be my only connection to some of you, as I wonder if the next step is my removal from this site. If you are reading this, I encourage everyone to make a copy of it in the event it is deleted again. I have posted before that NFB may not work for everyone … our brains are different. But with my posts stating that both my son and I realized a 60-70% improvement within our first 40 treatments, and Heidi stating that with a couple dozen sessions she has improved 75% … why would this not be used as encouragement for others? How much better would your life be if just a 70% improvement was achieved?

The following is my post from March 9th that had been deleted: Two months ago, on January 7th, I posted under the heading, "The CURE … Neurofeedback." This post you can look back at, message 24453, as well as subsequent posts relating to this. The following is a long response to various posts that began with this post by Dr. J, as she points out her opinion of Neurofeedback (NFB): Re: Help! I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. Be very cautious and remember there is an enormous placebo effect injust about all of those kinds of treatments, warm sympathetic provider ortherapist makes us all feel better.Be careful about the fees. This can run up a bunch. Most insurance companieswill not pay for neuro feedback.Dr. J While I appreciate that Dr. J provides this forum as an outlet that can be used in helping others with this condition, I find her post to be a disservice to those that are exploring NFB, considering it for themselves or their child, or presently undergoing sessions. It was also written with disregard for the successes I have posted concerning my son and me. Please re-read my previous posts, then read the following, excerpts from the last couple weeks, and you be the judge as to if our success is a "wild claim" or due to a "placebo effect." About 10 days ago a friend stopped by our home to visit. Although my wife had rated my improvement at a strong 90-95% just two months ago as I posted then, this visitor concerned her. "Mark," my visitor, was chewing gum in a very obnoxious manner and my wife was concerned that even though she had proclaimed me "completely cured" a number of times, that this could be just too much. For the next 2 hours Mark and I sat in my office looking over some forms and pictures, necessitating us in sitting about two foot apart. We had an enjoyable visit the entire 2 hours, I was not bothered at all by his gum chewing which he did the entire 2 hours, and in fact was disappointed when he had to leave. When he left my wife said, "There is no doubt you are cured, Mark was really obnoxious with that gum!" Sunday as my wife and I were finding our seats in the church sanctuary, I spotted two seats right in front of a young man that was chewing gum. Although pre-NFB this would have been impossible, it was no problem to me at all as we took these seats. In addition there were two people directly in my line-of-sight that were chomping on their gum. Pre-NFB I would have instantly stomped out and sat in the lobby for the next hour swearing to my wife later that I would never return to that church. Instead, I sat there enjoying the entire hour-plus service, completely relaxed, with my focus on the Pastor's words … with no focus on the gum chewers! Three days ago I volunteered at a homeless shelter. This is something I would not have ever subjected myself to in the past as certainly there would be not only staff and volunteers chewing gum, but some of the homeless as well. In addition to those former triggers … with some of the people we served suffering various mental issues and some lacking teeth to eat properly the eating manners of several of them were something that no Misophonia sufferer could possibly endure. Yes, all of this was present, but it did not bother me one bit, I smiled my entire 5 hours of service there, and enjoyed myself so much that I returned to volunteer again yesterday. Yesterday at the homeless shelter I was introduced to a gentleman, Jalen, one of those served, that was giving back by helping with the dishes. Now this person was very nice, he took his duties very seriously, and he chewed his gum just as seriously. For an entire 2 hours Jalen and I worked shoulder to shoulder as he gave me several instructions and we conversed on various topics … all the while he was chewing his gum. I had an enjoyable time serving again, found myself smiling throughout my entire 3 hours today, and thanked God that I was able to do this … something that would have been impossible pre-NFB! Most of the time when working with Jalen it wasn't even crossing my mind as to his gum chewing; I was not focusing on it! The few times I did notice actually made me feel good as I

smiled and thanked God again … and thanked Dr. Lyle and Neurofeedback. I suffered with this dreaded condition for better than 45 years and would have been resigned to live with it for the rest of my life had it not been that my wife and I noticed that our son was also plagued with Misophonia. I absolutely would not allow him to live his life as I had to and made it my mission to cure this. I tried several different avenues, including the $3,000 noise generators, several sessions with a very successful and credible hypnotherapist that I respect, and monthly 5-hour round trips for a year to a Homeopathic Doctor, all with no success. I told of the successes and improvement our son has also experienced in my previous posts. Our son takes seven full courses in his sophomore high school year, two of those being AP college courses, in attending school 40 hours a week, studies at home 15 hours, and works an average of 20 hours weekly. In addition to these 75 hours he has his 2 hours a week of NFB, an hour of guitar lessons, and still fits in plenty of social time with his friends. Those of you with children suffering with this condition, or those young people on this site in high school or college, you realize the success our son has had with Neurofeedback when I tell you that he just finished the trimester with a 4.333 grade point average … something that would have been impossible pre-NFB with all the triggers present in those

environments! Now our family is fortunate in that the cost of Neurofeedback sessions has not been an issue for us. Some of the detractors will certainly point out the number of sessions we have had but allow me to repeat what I had posted in January: At the end of the initial 40 sessions, both for myself as well as my son, my wife and I agreed that both of us had achieved a 60-70% improvement for our Misophonia versus our pre-Neurofeedback condition. Imagine how different your life would be, or that of your child, if you/he/she were rid of 60-70% of the triggers and anger … actually more on the anger as most of that leaves completely and is the most pronounced effect first realized. Although our lives would have been so much more enjoyable even if we had stopped after the initial 40 sessions, I made the decision to strive for perfection

and be cured completely. Quite possibly we could have stopped our sessions after the initial 40 and in time realized 100% relief as per the following that I posted before: The terrific part of NFB is that although there may be an "ebb & flow" of reactions during treatment as improvements are made … improvements realized are permanent. Even more promising are studies that have shown that even when NFB sessions are stopped, subtle improvements are still recognized months later. Dr. J said: I am sorry, this kind of therapy has been around a while and some pretty wildclaims have been made about other conditions or syndromes as to how well itworks. One of the conditions that have found the most documented success with Neurofeedback has been that of ADD / ADHD. Far from "wild claims" allow me to tell you of our daughter, "Kathy." A year ago Kathy was failing terribly in her 3rd grade year due to her ADD. It was a constant source of tears for our entire family as we realized the bleak future she faced. I'll make a long story … short, as it doesn't pertain to Misophonia, but rather the success of NFB, and hardly a placebo. Our tears are only of joy now as Kathy came home recently with her 4th grade spelling test at 25 out of 25 correct, her math test with 15 of 17 correct. She still has a ways to go as her learning was just not there until after she began Neurofeedback. But it

is absolutely not a placebo as Kathy not only did not want to be at her NFB sessions, but at her age does not even understand what her problems are, and did not understand the hopes of NFB. Yes, I tried the noise generators … no placebo effect! Both my son and I tried hypnotherapy … no placebo effect! Both my son and I tried the homeopathic remedies … no placebo effect! By the time we started NFB … we certainly weren't conditioned with the kind of hopefulness that would lend to having a placebo effect! Still, I will acknowledge, as does Dr. Lyle, my NFB practitioner, that an initial placebo effect is possible with several treatment strategies, including NFB. But a placebo effect would diminish quickly. Certainly this makes sense to even the most pessimistic of you or how do you think the pharmaceutical industry would become such a multi-billion dollar goliath? If placebo worked long term, don't you think that the "placebo sugar pill" would replace that of the actual drugs? My first NFB session was February 16th of last year … one year ago I was already experiencing improvements. A year later … hardly a placebo effect! According to Dr. J: Many here have tried NBF and not found relief. We can take that intoconsideration. Some have tried and found improvement. We would all like toknow, why? And why these people? Actually, not many have tried Neurofeedback for Misophonia. I know that it did not work for Adah, as I responded with the following in a previous post: "I am very sorry that Neurofeedback did not work for you (Adah) in the past. As I put in my earlier post, "All brains are different, and some people may not respond favorably to Neurofeedback, there are no guarantees." I hope you realize that NFB may yet work for you as it may have been the failure of your particular NFB practitioner or the protocol they used. For example, I have gone to Chiropractors (not for Misophonia) over the years that have not been able to give me the relief or help I was looking for. But, I have a Chiropractor now that uses the Activator device and I have immediate relief with a single appointment. It wasn't that Chiropractic wouldn't work for me … I just needed a different practitioner and protocol. I hope you will keep open the possibility of using Neurofeedback again." Kathy Howe has commented in the past that her daughter's NFB sessions seemed to help somewhat, had mixed results, and has been contemplating trying more sessions. Besides my son and me, I know of a practitioner in the Denton, Texas area that initially began seeing a child for ADD. The child's parents told of the Misophonia this child also suffered with. This practitioner is reporting success in diminishing the Misophonia. Another practitioner in Rhinebeck, New York, reported the following to me: "Indeed, Misophonia is a rare and rather misunderstood condition. Personally, I've come across only two cases in my 20 years of practice. One of them, a 20-year-old man, improved significantly after 20 sessions of NFB. He was approximately 80% less bothered by the sounds, according to his own assessment. That was almost 10 years ago. The other case, a teenage girl, had only a very modest improvement in her symptoms." ** For those that may live in the Denton, Texas area, or Rhinebeck, N.Y., and like the name of these practitioners, please send me an email to my Yahoo mail.

maikaefer said: I have only heard of one person to claim to be cured by neurofeedback (so far), I will personally not see it as a "cure" until more people have reported it to be so. I am glad others are trying it, but have tried so many things myself that I am weary, so I will remain cautiously skeptical along with hopeful. I don't think Dr. J should endorse a treatment based on one anonymous person's claim, IMO Maikaefer, I am in agreement in needing more people to try Neurofeedback. It is my hopes that my posts encourage more of those that can afford it to do so, as more successes and testimonials would help those others that struggle financially to feel it worth the risk to see if NFB works for them. I don't believe any of those posting, including myself, were asking or looking for an endorsement from Dr. J. It was her tone of disregard for the merits of NFB that lead to the rebuttals. As per your statement of "one anonymous person's claim" … I have pointed out before that my intentions are to stay anonymous as it would not be fair to subject my son to ridicule from his peers if our identity were known. I hope that all can appreciate & respect this. Beyond that, I would think that my anonymity would be a source of respect from others as it serves to show my only intentions in relaying my story … that of serving others in attempts to help. I have no desire to be the public face for this. I have no desire to receive "credit" if NFB truly leads others to cure. My only desire is in having the quiet satisfaction of knowing that I have helped others in defeating this. In fact I had been at the point that I was not going to post anymore.

I have achieved what I needed for my son and me, and saw no personal benefit in further participation to open myself up to some of the attacks and anger that is often present on this site. Someone on the site alluded to another person that had "willed" away their Misophonia (their words, not mine) and said that this person had left the site out of anger. I question as to if he left in anger, but very possibly in frustration and perhaps justifiably so, as it is frustrating to being both doubted and attacked when all you're trying to do is help others. It was "greg z" on this site that convinced me that there were well meaning people that followed this site, that although some may not be posting, were following, appreciating, and being helped by my story. In addition, when I think back of the despair that my wife and I faced when we realized our son had this condition also,

I feel I need to try one final time in helping to alleviate this for others. I am going on at length with this entire post as it is not my intentions to get in a back & forth debate. Any questions one may have please search my previous posts, the answers are there and I can't add much more. I may post at length, but it will be infrequent. I have given out my practitioner's name before, Dr. Lyle, so those that pursue NFB could feel free to have their practitioner contact him to discuss his experience with Misophonia. There is nothing in this for Dr. Lyle either except in assisting other practitioners. Like me, he has absolutely no interest in being interviewed by any media, such as the 20/20 proposed piece. At the appropriate time he will enter his report in the Neurofeedback Journal and feels this is the proper channel to follow. Since I would like this lengthy post to be the post to end all posts for me, in the interest of fully divulging what we have done for our Misophonia, the following is an excerpt from my first post back on May 1st of last year. Please read, or re-read that post also, message 20318: On April 11th I purchased a device for $900 from my Doctor called the Alpha-Stim 100. You can learn about it at www.alpha-stim.com. The testimonials from both patients and physicians are plentiful regarding it's use for anxiety, insomnia, & depression. It has been effective for other purposes too but they can only promote it for what the FDA has approved. I have been using the Alpha-Stim daily along with my 3 times a week Neurofeedback. I do not feel the Alpha-Stim is an alternative, but rather to be used in conjunction with the Neurofeedback. In addition, per my Doctor's instructions I take daily doses of fish oil, krill oil, and Suntheanine

L-Theanine. ** Use the Alpha-Stim now 2 or 3 times a week. We all take fish oil & krill oil. Only I take the Suntheanine L-Theanine per Dr. Lyle's recommendation due to my QEEG reading. ** Also of importance to point out is that Dr. Lyle has begun to use a system called the LORETA, which he will incorporate in every third session, is like a mini-QEEG, a functional imaging technique that looks directly at brain activity in "real time." The data to date is showing the use of the LORETA enables one to treat at a more successful rate … at a quicker pace … and for more conditions! I have covered a lot of territory here, and I hope all can observe … without any anger at all. It is such a nice benefit of the NFB to have the anger gone. I am a very fortunate man. Four years ago I survived an extremely deadly case of cancer and am cancer-free today. I have been able to find the cure for my son and me in eliminating this horrible condition from our lives. And we have found the treatment, NFB, to effectively give our little girl an opportunity at life. I praise God, and pray that all of you find relief also. "clyle"

> >

>> > > > > > Hi,> > > > > > > > > > > > First, please excuse my poor English â€" it is not my mother tongue.> > > > > > > > > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage when> > > he is with us (parents and his sister). He spends his days and nights> > > alone in his room. Most (if not all) of the messages in this forum> > > describe our life….All of this is accompanied with depression, and> > > OCD diagnosis. We have tried 5 different OCD medications, 2 different> > > psychological treatments (one was CBT). None of these treatments helped.> > > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each â€"> > > twice a week. The Neurofeedback

therapist says that she sees progress in> > > the measured brain waves levels, and that he is close to levels that we> > > can expect to see the changes (at least from the aspect of depression> > > â€" they do not have experience with miso…).> > > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback> > > progress and success. I wonder if I can ask to get information on> > > Neurofeedback treatments that show progress. I think that sharing> > > information may help all of us, and I intend to share information in> > > case of success (and in failure case as well…)> > > > > > My questions...:> > > > > > - What are the protocols of the Neurofeedback treatment â€" what> > > brainwaves are trained? For example

â€" raising the levels of Alpha> > > while reducing theta brainwaves levels, training beta, or SMR? These are> > > just example, and I would like to get this information in order to share> > > it with my son's therapist.> > > > > > â€" What is the location of the electrode? â€" I think that this is> > > also important.> > > > > > > > > > > > > > > I hope that it is OK asking these questions. I asked my son's> > > therapist to contact Clyle's practitioner as Clyle suggested. I want> > > to get as much information as possible in order to help my son to get> > > out of his daily suffering, and back to normal life as he deserves.> > > > > > > > > > > > Thank you!> > > > > >

Art> > >> >>

[Guest guest]

Hey wait a second, where are the posts?

I do not delete posts unless they are those ads for trying to get us to make

$400 per hour or unless they really cross the line with being rude or

inflammatory and I always write to the author and say, hey, this is not cool,

what you doing?

>

> Oh my goodness, you are right, Clyle.  The posts have been deleted.  My

posts and 's posts have also been deleted.  What a sad day for me, is

all I can say.  I don't mean to sound childish but I guess my words, Clyle's

and 's overall improvement does not mean anything.  We been kicked around

enough and I'm actually sitting here crying feeling so sad.   It makes me feel

like the times we have been laughed at, kicked out of offices and it's bringing

back too many painful memories. I guess this is not a site for hope, like I

thought.   I will carry on helping my daughter and still hoping but I guess I

can't do it here. I guess this is only a place to vent.  Yes misophonia is

horrible....how many times can we write that?  I will continue to read these

boards but that's about it.   No need for anyone to respond, I will continue

to keep in touch with all of you privately. Again I don't mean to sound childish

but I'm just not going to

> waste my time writing if it's going to be deleted.

>

> P.S.  offered me some food yesterday to try.  She also made me

breakfast in bed this morning, another huge improvement.  (Hope this doesn't

get deleted. )

[Guest guest]

Hey wait a second, where are the posts?

I do not delete posts unless they are those ads for trying to get us to make

$400 per hour or unless they really cross the line with being rude or

inflammatory and I always write to the author and say, hey, this is not cool,

what you doing?

>

> Oh my goodness, you are right, Clyle.  The posts have been deleted.  My

posts and 's posts have also been deleted.  What a sad day for me, is

all I can say.  I don't mean to sound childish but I guess my words, Clyle's

and 's overall improvement does not mean anything.  We been kicked around

enough and I'm actually sitting here crying feeling so sad.   It makes me feel

like the times we have been laughed at, kicked out of offices and it's bringing

back too many painful memories. I guess this is not a site for hope, like I

thought.   I will carry on helping my daughter and still hoping but I guess I

can't do it here. I guess this is only a place to vent.  Yes misophonia is

horrible....how many times can we write that?  I will continue to read these

boards but that's about it.   No need for anyone to respond, I will continue

to keep in touch with all of you privately. Again I don't mean to sound childish

but I'm just not going to

> waste my time writing if it's going to be deleted.

>

> P.S.  offered me some food yesterday to try.  She also made me

breakfast in bed this morning, another huge improvement.  (Hope this doesn't

get deleted. )

[Guest guest]

I can talk now at 60, but at 15 I would cut myself , take drugs and just act out so much ! My Mother ignored me and was ashamed of me,,, really I don't know how I have made this journey,, but I can remember what it was like and after all this time I know,, I would encourage parents to dive in and help their child ASAP! The Brain State I did helped and as I said it is the same as NFB. I isolate myself and have all my life,, I wouldn't wish this on anyone!Sent from my iPad

i'm not sure why we close off this group from anyone wanting to join. dr rothman was caring,compassionate and wanted to learn more from our members about the condition. i believe we should reach out to these individuals. people with this condition suffer greatly and many have had a plan to hurt themselves including my son. i am very grateful to cyle for his efforts to inform us about neurofeedback. heidi is another looking to help others. my son has begun nf treatments after suffering greatly for the past 4+ years by trying to cope on his own with such an irrational condition. these sufferers need help now;not waiting for some long winded study that gathered statistics or symptoms. in the past,some of my posts have been removed because i defended cyle from those who wanted to cast doubt on his very detailed efforts/successes. we need to have an open forum with all members being able to talk openly. we should be reaching out to nf providers, functional neurology etc for help is assessing and defeating misophonia.

>

> Totally agree with Bette on that one. Dr Marsha has set this group up to help people with this relatively unknown condition and for that I am extremely grateful! As a qualified professional we need to respect her opinion. She has an in-depth knowledge of this condition particularly from a medical point of view and I think its extremely unfair to point the finger at someone who is trying to help us. I mean just what would Dr gain from denying us a treatment that would help us???

>

=

[Guest guest]

I can talk now at 60, but at 15 I would cut myself , take drugs and just act out so much ! My Mother ignored me and was ashamed of me,,, really I don't know how I have made this journey,, but I can remember what it was like and after all this time I know,, I would encourage parents to dive in and help their child ASAP! The Brain State I did helped and as I said it is the same as NFB. I isolate myself and have all my life,, I wouldn't wish this on anyone!Sent from my iPad

i'm not sure why we close off this group from anyone wanting to join. dr rothman was caring,compassionate and wanted to learn more from our members about the condition. i believe we should reach out to these individuals. people with this condition suffer greatly and many have had a plan to hurt themselves including my son. i am very grateful to cyle for his efforts to inform us about neurofeedback. heidi is another looking to help others. my son has begun nf treatments after suffering greatly for the past 4+ years by trying to cope on his own with such an irrational condition. these sufferers need help now;not waiting for some long winded study that gathered statistics or symptoms. in the past,some of my posts have been removed because i defended cyle from those who wanted to cast doubt on his very detailed efforts/successes. we need to have an open forum with all members being able to talk openly. we should be reaching out to nf providers, functional neurology etc for help is assessing and defeating misophonia.

>

> Totally agree with Bette on that one. Dr Marsha has set this group up to help people with this relatively unknown condition and for that I am extremely grateful! As a qualified professional we need to respect her opinion. She has an in-depth knowledge of this condition particularly from a medical point of view and I think its extremely unfair to point the finger at someone who is trying to help us. I mean just what would Dr gain from denying us a treatment that would help us???

>

=

[Guest guest]

I knew someone who not only had her post deleted but she was removed from the

group simply for providing alternative helpful information.

> > > > >

> > > > >

> > > > > Hi,

> > > > >

> > > > >

> > > > >

> > > > > First, please excuse my poor English †" it is not my mother

tongue.

> > > > >

> > > > >

> > > > >

> > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage

when

> > > > > he is with us (parents and his sister). He spends his days and nights

> > > > > alone in his room. Most (if not all) of the messages in this forum

> > > > > describe our life….All of this is accompanied with

depression, and

> > > > > OCD diagnosis. We have tried 5 different OCD medications, 2 different

> > > > > psychological treatments (one was CBT). None of these treatments

helped.

> > > > >

> > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each

†"

> > > > > twice a week. The Neurofeedback therapist says that she sees progress

in

> > > > > the measured brain waves levels, and that he is close to levels that

we

> > > > > can expect to see the changes (at least from the aspect of depression

> > > > > †" they do not have experience with miso…).

> > > > >

> > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback

> > > > > progress and success. I wonder if I can ask to get information on

> > > > > Neurofeedback treatments that show progress. I think that sharing

> > > > > information may help all of us, and I intend to share information in

> > > > > case of success (and in failure case as well…)

> > > > >

> > > > > My questions...:

> > > > >

> > > > > - What are the protocols of the Neurofeedback treatment †"

what

> > > > > brainwaves are trained? For example †" raising the levels of

Alpha

> > > > > while reducing theta brainwaves levels, training beta, or SMR? These

are

> > > > > just example, and I would like to get this information in order to

share

> > > > > it with my son's therapist.

> > > > >

> > > > > †" What is the location of the electrode? †" I

think that this is

> > > > > also important.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I hope that it is OK asking these questions. I asked my son's

> > > > > therapist to contact Clyle's practitioner as Clyle suggested. I want

> > > > > to get as much information as possible in order to help my son to get

> > > > > out of his daily suffering, and back to normal life as he deserves.

> > > > >

> > > > >

> > > > >

> > > > > Thank you!

> > > > >

> > > > > Art

> > > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

I knew someone who not only had her post deleted but she was removed from the

group simply for providing alternative helpful information.

> > > > >

> > > > >

> > > > > Hi,

> > > > >

> > > > >

> > > > >

> > > > > First, please excuse my poor English †" it is not my mother

tongue.

> > > > >

> > > > >

> > > > >

> > > > > My 13 years old son suffers from 100% miso symptoms with 24/7 rage

when

> > > > > he is with us (parents and his sister). He spends his days and nights

> > > > > alone in his room. Most (if not all) of the messages in this forum

> > > > > describe our life….All of this is accompanied with

depression, and

> > > > > OCD diagnosis. We have tried 5 different OCD medications, 2 different

> > > > > psychological treatments (one was CBT). None of these treatments

helped.

> > > > >

> > > > > He started Neurofeedback, and done 21 sessions of 30 minutes each

†"

> > > > > twice a week. The Neurofeedback therapist says that she sees progress

in

> > > > > the measured brain waves levels, and that he is close to levels that

we

> > > > > can expect to see the changes (at least from the aspect of depression

> > > > > †" they do not have experience with miso…).

> > > > >

> > > > > I read messages from Clyle, Heidi and Bernadette on Neurofeedback

> > > > > progress and success. I wonder if I can ask to get information on

> > > > > Neurofeedback treatments that show progress. I think that sharing

> > > > > information may help all of us, and I intend to share information in

> > > > > case of success (and in failure case as well…)

> > > > >

> > > > > My questions...:

> > > > >

> > > > > - What are the protocols of the Neurofeedback treatment †"

what

> > > > > brainwaves are trained? For example †" raising the levels of

Alpha

> > > > > while reducing theta brainwaves levels, training beta, or SMR? These

are

> > > > > just example, and I would like to get this information in order to

share

> > > > > it with my son's therapist.

> > > > >

> > > > > †" What is the location of the electrode? †" I

think that this is

> > > > > also important.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I hope that it is OK asking these questions. I asked my son's

> > > > > therapist to contact Clyle's practitioner as Clyle suggested. I want

> > > > > to get as much information as possible in order to help my son to get

> > > > > out of his daily suffering, and back to normal life as he deserves.

> > > > >

> > > > >

> > > > >

> > > > > Thank you!

> > > > >

> > > > > Art

> > > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

I’ve been where you are.  The best you can do is just support her and tell her that you know it’s not her fault.  Also, make sure to use coping mechanisms such as turning on the fan over the stove at meal times, using paper or soft plastic plates so there is no clinking of silverware, not chewing gum around her, etc.  You need her to know she is at least safe and supported at home.  Also, talk to her school and teachers and tell them that she needs to be able to wear headphones and leave the classroom if she is feeling triggered.  My daughter never had to, but it just helped knowing that she could.  She didn’t feel trapped. My daughter is 15 now, and she has definitely gotten better (she had a pretty extreme case).  I think knowing that it’s not her fault and taking away the extreme guilt factor really helps. Please try not to despair—I remember being so upset, I was very depressed because as a mother you feel so helpless watching your child suffer.   It can get better. Kathy Howe From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Simone AndisonSent: Tuesday, July 24, 2012 8:45 AMTo: Soundsensitivity Cc: Soundsensitivity Subject: Re: Re: Neurofeedback questions I totally agree, as a mother of a 13 year olddaughter with definite miso symptoms it is extremely hard as Dr J says, she absolutelybelieves that we all make the noises just to annoy her when in actual fact I can't even hear the noises she is complaining about.So wow my only hope at the moment is thatshe will grow, mature and hopefully learn to control her reactions.Please give me strength!Sent from my iPhone Have to say that the below def applies to me - as a young teenager I was convinced that every1 was doing it on purpose but obviously I know now that they were not. As I've grown up, I have matured and whilst I'm not saying I'm cured by any standard, my reactions aren't half as extreme as they used to be and I do believe alot of that is down to growing up and understanding things a bit better. > > > To: Soundsensitivity@ yahoogroups. com > > Sent: Sunday, July 22, 2012 2:00 AM> > Subject: Re: Neurofeedback questions> > > > > > Â > > You know we all want everyone to find the way back to pre=miso status.> > > > Our main goal.> > > > One thing I did tell you prior to this time period, in the past, is that the children around 12-14 have the worst time of all with the symptoms and reactions. Very difficult age for many reasons, it would appear.> > > > I often advise parents that the maturity level directly affects the miso/4S reactiveness, and that as the child matures, often life can improve as their comprehendsion of the world changes so much in those pre teen and early teen years.> > > > Often the child of 12-14 does sincerely believe that everyone around them IS doing all of this on purpose. 100 percent sure.> > > > As they mature, they begin to realize that the people around are not doing it on purpose, for the most part, and this can really impact the level of reactivity.> > > > I would not hesitate to support those who find certain treatments to appear effective, and I certainly cheer those improvements on, but again, I am simply requesting that we continue to see this as an experiment that needs attention and long term outcome study.> > > > That is all. Just a small yellow caution light.> > > > I feel compelled to say this, with new members joining up all the time.> > > > Dr. J

[Guest guest]

I’ve been where you are.  The best you can do is just support her and tell her that you know it’s not her fault.  Also, make sure to use coping mechanisms such as turning on the fan over the stove at meal times, using paper or soft plastic plates so there is no clinking of silverware, not chewing gum around her, etc.  You need her to know she is at least safe and supported at home.  Also, talk to her school and teachers and tell them that she needs to be able to wear headphones and leave the classroom if she is feeling triggered.  My daughter never had to, but it just helped knowing that she could.  She didn’t feel trapped. My daughter is 15 now, and she has definitely gotten better (she had a pretty extreme case).  I think knowing that it’s not her fault and taking away the extreme guilt factor really helps. Please try not to despair—I remember being so upset, I was very depressed because as a mother you feel so helpless watching your child suffer.   It can get better. Kathy Howe From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Simone AndisonSent: Tuesday, July 24, 2012 8:45 AMTo: Soundsensitivity Cc: Soundsensitivity Subject: Re: Re: Neurofeedback questions I totally agree, as a mother of a 13 year olddaughter with definite miso symptoms it is extremely hard as Dr J says, she absolutelybelieves that we all make the noises just to annoy her when in actual fact I can't even hear the noises she is complaining about.So wow my only hope at the moment is thatshe will grow, mature and hopefully learn to control her reactions.Please give me strength!Sent from my iPhone Have to say that the below def applies to me - as a young teenager I was convinced that every1 was doing it on purpose but obviously I know now that they were not. As I've grown up, I have matured and whilst I'm not saying I'm cured by any standard, my reactions aren't half as extreme as they used to be and I do believe alot of that is down to growing up and understanding things a bit better. > > > To: Soundsensitivity@ yahoogroups. com > > Sent: Sunday, July 22, 2012 2:00 AM> > Subject: Re: Neurofeedback questions> > > > > > Â > > You know we all want everyone to find the way back to pre=miso status.> > > > Our main goal.> > > > One thing I did tell you prior to this time period, in the past, is that the children around 12-14 have the worst time of all with the symptoms and reactions. Very difficult age for many reasons, it would appear.> > > > I often advise parents that the maturity level directly affects the miso/4S reactiveness, and that as the child matures, often life can improve as their comprehendsion of the world changes so much in those pre teen and early teen years.> > > > Often the child of 12-14 does sincerely believe that everyone around them IS doing all of this on purpose. 100 percent sure.> > > > As they mature, they begin to realize that the people around are not doing it on purpose, for the most part, and this can really impact the level of reactivity.> > > > I would not hesitate to support those who find certain treatments to appear effective, and I certainly cheer those improvements on, but again, I am simply requesting that we continue to see this as an experiment that needs attention and long term outcome study.> > > > That is all. Just a small yellow caution light.> > > > I feel compelled to say this, with new members joining up all the time.> > > > Dr. J

[Guest guest]

From what I can ascertain, the period of 11-14 or thereabouts, is the worse time

for the girls. Probably the combination with hormones and regular teenage

angst.

DrJ

>

>

>

>

> Have to say that the below def applies to me - as a young teenager I was

convinced that every1 was doing it on purpose but obviously I know now that they

were not. As I've grown up, I have matured and whilst I'm not saying I'm cured

by any standard, my reactions aren't half as extreme as they used to be and I do

believe alot of that is down to growing up and understanding things a bit

better.

>

>

>

>

>

> > > From: anthro_pop Oregon7@

> > > To:

<http://uk.mc298.mail.yahoo.com/mc/compose?to=Soundsensitivity%40yahoogroups.com\

> Soundsensitivity@ yahoogroups. com

> > > Sent: Sunday, July 22, 2012 2:00 AM

> > > Subject: Re: Neurofeedback questions

> > >

> > >

> > > Â

> > > You know we all want everyone to find the way back to pre=miso status.

> > >

> > > Our main goal.

> > >

> > > One thing I did tell you prior to this time period, in the past, is that

the children around 12-14 have the worst time of all with the symptoms and

reactions. Very difficult age for many reasons, it would appear.

> > >

> > > I often advise parents that the maturity level directly affects the

miso/4S reactiveness, and that as the child matures, often life can improve as

their comprehendsion of the world changes so much in those pre teen and early

teen years.

> > >

> > > Often the child of 12-14 does sincerely believe that everyone around them

IS doing all of this on purpose. 100 percent sure.

> > >

> > > As they mature, they begin to realize that the people around are not doing

it on purpose, for the most part, and this can really impact the level of

reactivity.

> > >

> > > I would not hesitate to support those who find certain treatments to

appear effective, and I certainly cheer those improvements on, but again, I am

simply requesting that we continue to see this as an experiment that needs

attention and long term outcome study.

> > >

> > > That is all. Just a small yellow caution light.

> > >

> > > I feel compelled to say this, with new members joining up all the time.

> > >

> > > Dr. J

>

[Guest guest]

From what I can ascertain, the period of 11-14 or thereabouts, is the worse time

for the girls. Probably the combination with hormones and regular teenage

angst.

DrJ

>

>

>

>

> Have to say that the below def applies to me - as a young teenager I was

convinced that every1 was doing it on purpose but obviously I know now that they

were not. As I've grown up, I have matured and whilst I'm not saying I'm cured

by any standard, my reactions aren't half as extreme as they used to be and I do

believe alot of that is down to growing up and understanding things a bit

better.

>

>

>

>

>

> > > From: anthro_pop Oregon7@

> > > To:

<http://uk.mc298.mail.yahoo.com/mc/compose?to=Soundsensitivity%40yahoogroups.com\

> Soundsensitivity@ yahoogroups. com

> > > Sent: Sunday, July 22, 2012 2:00 AM

> > > Subject: Re: Neurofeedback questions

> > >

> > >

> > > Â

> > > You know we all want everyone to find the way back to pre=miso status.

> > >

> > > Our main goal.

> > >

> > > One thing I did tell you prior to this time period, in the past, is that

the children around 12-14 have the worst time of all with the symptoms and

reactions. Very difficult age for many reasons, it would appear.

> > >

> > > I often advise parents that the maturity level directly affects the

miso/4S reactiveness, and that as the child matures, often life can improve as

their comprehendsion of the world changes so much in those pre teen and early

teen years.

> > >

> > > Often the child of 12-14 does sincerely believe that everyone around them

IS doing all of this on purpose. 100 percent sure.

> > >

> > > As they mature, they begin to realize that the people around are not doing

it on purpose, for the most part, and this can really impact the level of

reactivity.

> > >

> > > I would not hesitate to support those who find certain treatments to

appear effective, and I certainly cheer those improvements on, but again, I am

simply requesting that we continue to see this as an experiment that needs

attention and long term outcome study.

> > >

> > > That is all. Just a small yellow caution light.

> > >

> > > I feel compelled to say this, with new members joining up all the time.

> > >

> > > Dr. J

>