Re: Neurofeedback questions

[Guest guest]

There are cases of 4S/miso who have achieved the same results as the ones you

are quoting below, with the MMP, but again, we must be patient and see if the

improvement persists.....

MJ

> > >

> > >

> > > 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]

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

> >

> >

> > 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]

Heidi: I should hesitate to argue with a lawyer!

Lots of words and good thoughts in your post.

Read carefully because I am not disagreeing with the main points you make. I

just want to put out a caution sign. I think that is also a legitimate stance

here.

Couple of thoughts:

Dr. Jastreboff and Gold provided TRT in the US and Dr. Hazell in England

for years before training other people to do that same approach. From a

scientific point of view, they kept good data pre and post treatment and Dr.

Jastreboff published and presented at professional meetings. I attended his 2nd

training in 1997, and that was about 7 years after he started providing his new

approach, TRT.

The same is true of other methods used for tinnitus. The author-creators,

provide it under strict controls and keep track, and after this has been

published in peer reviewed journals, then the fact is that others try to produce

the same outcomes in various settings, and this is also published, and over

time, a body of data accumulates and more people are trained to provide this

method and it becomes a standard of care.

That is the science that I respect and uphold.

More thoughts: I do believe miso/4S is neurological. I also believe it carries

many pscyhological overlays, which build up quickly and become an inherent part

of the problem. I think you might agree with me on that. Nearly every disease

or medical problem has psychological overlay, we are not stones. We are human

beings with feelings, thoughts, wishes, and everything else.

The auditory system is also of course a neurological function. And for many

people, miso/4S centers around the auditory function. So it is certainly proper

that some of the approaches are going to focus on that auditory system as a

means to access the other central nervous system function. You may not be aware

that the auditory system is very closely linked and interwoven with the

emotional system and our automatic body control system, like heart rate or

hormone secretion.

We are complex and intertwinced beings with complex functions and interdependent

responses. When I am sad, salty water flows out of holes near my eyes and runs

down my face. When I feel happy, my blood flows to my cheeks and they pink up

and I make odd higher pitched noises from my mouth (laughing).

Using sound as therapy for the brain is as legitimate as using wired up

electrodes that send energy thru the skull.

There are new tinnitus treatments coming that will use electro magnetic energy

through the skull. This is not brand new, but new applications and technology.

I stand in support of the new Misphonia Association and the rights of people

here to share, support, encourage, feel safe, and learn.

Those are my own goals.

I appreciate your articulate fingers.

Marsha , AuD

[Guest guest]

Very well written, Thank You!!!!!!Sent from my iPad

The fact of the matter is that every single symptom or disorder that has ever been helped by NFB has always started by a “let’s try it and see†collaboration between a frustrated symptom bearer and a curious practitioner. In fact, the whole field of NFB was started “by accident†when Barry Sterman used, (out of desperation because his test subjects – cats – were dying and he needed more) cats that “shouldn’t have been included†since they had been part of another study. Well, THOSE cats didn’t die. The only difference? They had been trained with NFB for a research (not clinical) study. Hence, the birth of NFB. So if NFB training meant those cats didn’t get seizures when exposed to rocket fuel, could it be that training human brains could make them resistant to seizure when they had to load rocket fuel? If they have left it with “I don’t know, but the experts aren’t convinced†we would have thousands of people still on seizure meds, some dying premature deaths (as still happens with traditional interventions) and so forth. Was it a risk of time/money to take your child to NFB in the EARLY days? Yes, just ask the Othmers (one a PhD physicist and one a PhD level neuroscientist). But their kid got better and they’ve grown the field with methodical clinical studies for over 20 years. Today? No. ADHD – after more than 400,000 documented success cases, including double blind studies written up in major journals and even summarized in Reader’s Digest – the “experts†are still saying there is no proof and “we haven’t seen presentations at our conferences.†What is actually happening is that they are not reading the published research studies, and they are denying multiple requests by various NFB researchers and practitioners to present at their conferences. They get rejections every year from Neurology, Psychiatry, Pediatric conferences, and related fields. It’s a straw man to say there is no research or proof, but this is the regular and repeated position of the “experts.†As for NFB and Misophonia, because NFB is inherently SYMPTOM based, not DIAGNOSIS based, a NFB practitioner has little reason to dialog with a particular expert diagnosis-giver. NFB practitioners are qualified and licensed to give diagnoses, even if it's something they have never heard of and frankly often times medical diagnostics are very limiting. Bottom line, no matter who assigns a diagnosis, the diagnosis doesn’t fix anything, while addressing symptoms as they relate to the brain, there’s a helpful approach. If the brain is involved, then NFB can have an impact. Is it important to know HOW the brain is creating the problem? Absolutely. But a diagnosis alone says nothing about that. Nor has anyone in the world of audiology stated that they know HOW the brain is creating this problem because NO research has been done (other than the Jaserboffs who say it's because we relate a bad event to the trigger, which to me is hogwash). A well described set of symptoms and experiences on the other hand, will go a long way towards pinpointing how a given brain is creating and maintaining a particular set of symptoms. It’s because the NFB practitioners work from the understanding of the BRAIN, not the mind, that they can narrow down the problem and intervene. So with Misophonia, if all those who treat us keep seeing it as a psychosomatic issue, no one is going to make much headway, and a lot of people will remain unhelped. Or hurt, in the case of any “experts†who thinks it prudent to expose suffering people to more of the same auditory harassment and call it “treatment.†Once we describe our symptoms to a NFB practitioner, they can figure out what parts of the brain are involved, and they can intervene because of what they know about the brain. We provide them with very quick input from us about changes (or not) and they can make adjustments moment by moment. They are trained to actually believe what we are telling them, so we are part of our own treatment process. So Dr. , you claim expertise in Misophonia because you started in the area of tinnitus, saw these recurring problems and expanded. Similarly, why can’t NFB providers use the tinnitus research in NFB as a starting point for treating Misophonia? It is entirely inaccurate to say there is no NFB research in this area because there is in fact research in tinnitus using NFB, and there are now case studies with Misophonia. I highly doubted audiologists waited to treat those with tinnitus before double blind research studies were conducted. Same with Misophono, audiologists have had no problem attempting to treat us before any double blind studies have been conducted. As for the Placebo argument, yes a Placebo can be strong, but as several of us have posted previously, it's not always bad if relief is the goal. “Hard research†as you desire Dr. , has conclusively shown that SSRI’s (anti depressant drugs) are 83% placebo. Do you advocate all people stop taking SSRIs? However, given the certain and uncomfortable side effects these drugs carry (and high cost), you’d think maybe we should actually consider whether it’s ethical for the pharmaceuticals to continue to sell these placebos. To try something that may include a partial placebo effect (and I acknowledge this possibility) but has no ongoing negative side effects seems FAR more reasonable to me. You can’t get away from placebo; read the literature. But practitioners can employ it to a our benefit – or you can just sell drugs and let patient suffer the very real side effects as their body chemistry is altered in a very real, non-placebo way. So in the end, why would it even occur to a NFB practitioners to contact audiologists who aren't employing up-to-date brain modeling as a core part of the theory of the disorder? What is it they could tell them that we the patients could not? It appears it would turn into the NFB doctor educating the audiologists about the rich contributions of the neurosciences over the past decade. ly, I would rather have my doctor treat me and talk to other NFB doctors who also want to provide treatment to other Misophonia suffers. We are suffering, we are looking for those who can actually help alleviate that suffering. I and others have an obligation quite frankly to let our fellow Misophonians know about what so far is helping us. We have talked about CBT quite a bit in the past, and Dr. you never once asked why our CBT therapist haven't contacted you. Why would a CBT therapist contact an audiologist though? They wouldn't as their form of treatment, like NFB, is also symptom based. There is no difference, except that NFB has actually helped many of us ELIMINATE, not just mask or cope with triggers. Most of us trying NFB have tried everything the establishment has to offer, and often have tried a variety of other interventions as well (including prescription drugs). So we have experienced standard intervention that hasn’t resolved our disorder. Those that "know" about this disorder have not given us any options that work, and when I say work I mean ELIMINATE the triggers, not mask them or help us cope. So again, why would our NFB doctors contact those in the "know"? I'm not being flippant or argumentative, I'm just being direct, there is simply no reason for them to. I've said this before, Dr. , I appreciate that you brought us all here together and that you have separated yourself from the Jaserboffs who seemingly believe this is all in our heads. However, the evidence strongly is pointing to the fact that our problem is neurological, which you even acknowledge on 20/20, and therefore not auditory at all. So a NFB doctor who is an expert in the neurological workings of our brain is frankly where I want my treatment to lie. NFB is not experimental (there is hard scientific evidence it works for ADD and other disorders), it is not dangerous, it is not new, it is not a threat to us. I really hope it's not considered a threat to the overall well being of this list serv, as our support here is to discuss our problem and how we are coping and what we are trying to fix ourselves. It just so happens that NFB is turning out to be something extremely helpful to those of us who are trying it and we should not be kept from talking about what we always have: our problem, our coping strategies and what we are trying to help with our insufferable problem.Heidi

I would be very cautious about using NBF for misophonia. There are a couple anecdotal reports here but again, this is very much an experiment and I caution everyone to be thoughtful before rushing off to spend $ on sessions that have zero database or history.

The Placebo effect is enormous and directly related to how badly the person wants and needs to improve.

I am quite concerned about this topic and how those with children and teens are responding.

I have tried to keep those who want to 'sell' you therapies out of this group for many reasons, unless they seemed to have a legitimate scientific approach, presented by professionals with clear certification and accepted credentials, etc etc.

It never occured to me that it would arise FROM those here who are members of the group. It probably should have.

I do not want to stymie anyone's effort to obtain help for misophonia. We have so much territory to explore.

But I do not WANT this group to become a neuro bio feedback group, either. There are surely support groups or sites for that focus.

From what I can tell, and it does make me wonder, every one who sells NBF is willing to stick on electrodes to heads, whatever size, and do 'treatments' for something that they do not know about, have never heard of, cannot find any basis for, and cannot provide any hard evidence of long term outcome.

THAT worries me. Not one single provider of this 'service' has contacted me or any other Misophonia professional that I know of....to ask about it, invite collaboration or sharing.

Every week I get calls from audiologists who want to know, what is this, how can I help?

But not a single NBF vendor has ever called me. Why is that?

Marsha , Audiologist

>

>

> 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

>

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

=

[Guest guest]

Thank you for your excellent post Heidi,You have not only done your homework regarding NFB but you have are able to articulate your thoughts in a way that all can understand and learn from. These posts are very helpful to myself and I am sure everyone else. As I have said before, I have tried nearly every treatment out there over the past 45 years, beginning at the age of 15. Except for a possible temporary placebo effect, non have even put a dent in the Miso. As far as I am concerned, this is not an audiology issue at all. It is neurological and should be studied and treated as such. What really matters is the results, are the

symptoms reduced or eliminated and is the treatment permanent. Placebo effects, as far as I know, are never permanent. We are not trying to trick the brain, but alter it in a way that brings it back to a normal state. What upset me about Dr. 's post ( please no disrespect Dr!) is that it seems to be putting the brakes on something that, for the first time in my very frustrating quest for a cure,really works!! We are making progress. Going to psychiatrists, taking mind and body numbing drugs, and God knows what else , is a waste of time and money, and can be downright dangerous. Has anyone reported being permanently cured and happy as a result of these treatments?We who suffer have been given a gift, and God knows we need one. It is not cheap or well documented as yet, and will need many more trials, but it seems to me

the one treatment, at this point in time, that holds out any hope of a real and lasting cure for us. The more people that try NFB and compare results, the sooner we will know if it works. If it is bunk, we will soon know.Until something better comes along, it is the route I am going to take. Mike To: Soundsensitivity Sent: Saturday, July 21, 2012 8:30 PM Subject: Re: Re: Neurofeedback questions

The fact of the matter is that every single symptom or disorder that has ever been helped by NFB has always started by a “let’s try it and see†collaboration between a frustrated symptom bearer and a curious practitioner. In fact, the whole field of NFB was started “by accident†when Barry Sterman used, (out of desperation because his test subjects – cats – were dying and he needed more) cats that “shouldn’t have been included†since they had been part of another study. Well, THOSE cats didn’t die. The only difference? They had been trained with NFB for a research (not clinical) study. Hence, the birth of NFB. So if NFB training meant those cats didn’t get seizures when exposed to rocket fuel, could it be that training human brains could make them resistant to seizure when they had to load rocket fuel? If they have left it with “I don’t know, but the experts aren’t convinced†we would have thousands of people still on seizure meds, some dying premature deaths (as still happens with traditional interventions) and so forth. Was it a risk of time/money to take your child to NFB in the EARLY days? Yes, just ask the Othmers (one a PhD physicist and one a PhD level neuroscientist). But their kid got better and they’ve grown the field with methodical clinical studies for over 20 years. Today? No. ADHD – after more than 400,000 documented success cases, including double blind studies written up in major journals and even summarized in Reader’s Digest – the “experts†are still saying there is no proof and “we haven’t seen presentations at our conferences.†What is actually happening is that they are not reading the published research studies, and they are denying multiple requests by various NFB researchers and practitioners to present at their conferences. They get rejections every year from Neurology, Psychiatry, Pediatric conferences, and related fields. It’s a straw man to say there is no research or proof, but this is the regular and repeated position of the

“experts.†As for NFB and Misophonia, because NFB is inherently SYMPTOM based, not DIAGNOSIS based, a NFB practitioner has little reason to dialog with a particular expert diagnosis-giver. NFB practitioners are qualified and licensed to give diagnoses, even if it's something they have never heard of and frankly often times medical diagnostics are very limiting. Bottom line, no matter who assigns a diagnosis, the diagnosis doesn’t fix anything, while addressing symptoms as they relate to the brain, there’s a helpful approach. If the brain is involved, then NFB can have an impact. Is it important to know HOW the brain is creating the problem? Absolutely. But a diagnosis alone says nothing about that. Nor has anyone in the world of audiology stated that they know HOW the brain is creating this problem because NO research has been done (other than the Jaserboffs who say it's because we relate a bad event to the trigger, which to me is hogwash). A well described set of symptoms and experiences on the other hand, will go a long way towards pinpointing how a given brain is creating and maintaining a particular set of symptoms. It’s because the NFB practitioners work from the understanding of the BRAIN, not the mind, that they can narrow down the problem and intervene. So with Misophonia, if all those who treat us keep seeing it as a psychosomatic issue, no one is going to make much headway, and a lot of people will remain unhelped. Or hurt, in the case of any “experts†who thinks it prudent to expose suffering people to more of the same auditory harassment and call it “treatment.†Once we describe

our symptoms to a NFB practitioner, they can figure out what parts of the brain are involved, and they can intervene because of what they know about the brain. We provide them with very quick input from us about changes (or not) and they can make adjustments moment by moment. They are trained to actually believe what we are telling them, so we are part of our own treatment process. So Dr. , you claim expertise in Misophonia because you started in the area of tinnitus, saw these recurring problems and expanded. Similarly, why can’t NFB providers use the tinnitus research in NFB as a starting point for treating Misophonia?

It is entirely inaccurate to say there is no NFB research in this area because there is in fact research in tinnitus using NFB, and there are now case studies with Misophonia. I highly doubted audiologists waited to treat those with tinnitus before double blind research studies were conducted. Same with Misophono, audiologists have had no problem attempting to treat us before any double blind studies have been conducted. As for the Placebo argument, yes a Placebo can be strong, but as several of us have posted previously, it's not always bad if relief is the goal. “Hard research†as you desire Dr. , has

conclusively shown that SSRI’s (anti depressant drugs) are 83% placebo. Do you advocate all people stop taking SSRIs? However, given the certain and uncomfortable side effects these drugs carry (and high cost), you’d think maybe we should actually consider whether it’s ethical for the pharmaceuticals to continue to sell these placebos. To try something that may include a partial placebo effect (and I acknowledge this possibility) but has no ongoing negative side effects seems FAR more reasonable to me. You can’t get away from placebo; read the literature. But practitioners can employ it to a our benefit – or you can just sell drugs and let patient suffer the very real side effects as their

body chemistry is altered in a very real, non-placebo way. So in the end, why would it even occur to a NFB practitioners to contact audiologists who aren't employing up-to-date brain modeling as a core part of the theory of the disorder? What is it they could tell them that we the patients could not? It appears it would turn into the NFB doctor educating

the audiologists about the rich contributions of the neurosciences over the past decade. ly, I would rather have my doctor treat me and talk to other NFB doctors who also want to provide treatment to other Misophonia suffers. We are suffering, we are looking for those who can actually help alleviate that suffering. I and others have an obligation quite frankly to let our fellow Misophonians know about what so far is helping us. We have talked about CBT quite a bit in the past, and Dr. you never once asked why our CBT therapist haven't contacted you. Why would a CBT therapist contact an audiologist

though? They wouldn't as their form of treatment, like NFB, is also symptom based. There is no difference, except that NFB has actually helped many of us ELIMINATE, not just mask or cope with triggers. Most of us trying NFB have tried everything the establishment has to offer, and often have tried a variety of other interventions as well (including prescription drugs). So we have experienced standard intervention that hasn’t resolved our disorder. Those that "know" about this disorder have not given us any options that work, and when I say work I mean ELIMINATE the triggers, not mask them or help us cope. So again, why would our NFB doctors contact those in the "know"? I'm not being flippant or argumentative, I'm just being direct, there is simply no reason for them to. I've said this before, Dr. , I appreciate that you brought us all here together and that you have separated yourself from the Jaserboffs who seemingly believe this is all in our heads. However, the evidence

strongly is pointing to the fact that our problem is neurological, which you even acknowledge on 20/20, and therefore not auditory at all. So a NFB doctor who is an expert in the neurological workings of our brain is frankly where I want my treatment to lie. NFB is not experimental (there is hard scientific evidence it works for ADD and other disorders), it is not dangerous, it is not new, it is not a threat to us. I really hope it's not considered a threat to the overall well being of this list serv, as our support here is to discuss our problem and how we are coping and what we are trying to fix ourselves. It just so happens that NFB is turning out to be something extremely helpful to those of us who are trying it and we should not be kept from talking about what we always have: our problem, our coping strategies and what we are trying to help with our insufferable problem.Heidi

I would be very cautious about using NBF for misophonia. There are a couple anecdotal reports here but again, this is very much an experiment and I caution everyone to be thoughtful before rushing off to spend $ on sessions that have zero database or history.

The Placebo effect is enormous and directly related to how badly the person wants and needs to improve.

I am quite concerned about this topic and how those with children and teens are responding.

I have tried to keep those who want to 'sell' you therapies out of this group for many reasons, unless they seemed to have a legitimate scientific approach, presented by professionals with clear certification and accepted credentials, etc etc.

It never occured to me that it would arise FROM those here who are members of the group. It probably should have.

I do not want to stymie anyone's effort to obtain help for misophonia. We have so much territory to explore.

But I do not WANT this group to become a neuro bio feedback group, either. There are surely support groups or sites for that focus.

From what I can tell, and it does make me wonder, every one who sells NBF is willing to stick on electrodes to heads, whatever size, and do 'treatments' for something that they do not know about, have never heard of, cannot find any basis for, and cannot provide any hard evidence of long term outcome.

THAT worries me. Not one single provider of this 'service' has contacted me or any other Misophonia professional that I know of....to ask about it, invite collaboration or sharing.

Every week I get calls from audiologists who want to know, what is this, how can I help?

But not a single NBF vendor has ever called me. Why is that?

Marsha , Audiologist

>

>

> 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

>

Gorgeous, youthful skin is waiting for you. Real science. Real results.www.heidisalerno.nerium.com

[Guest guest]

Thank you Dr J. Have any of the Misophonics being treated by the MMP been

posting on this site? On any site? Have they been told to be quiet about the

study until the facts are published? How were those people chosen for

participation? I have been struggling to stay alive to find answers for 45

years and if anyone anywhere had told me I could have participated in any study

(as at UCSD) I would have jumped at the chance to find even a modicum of relief.

I always look for studies in my area (San Diego has a large research population)

and have found nothing for the MMP. I would happily give my left ear for a

placebo effect!!! If case-by-case is all we have at this point, that's OK.

It's all we have. Do you think breast cancer patients have been told to wait

until we have more information before they start treatment? And in the

beginning of the AIDS epidemic, were people told to wait in the hall until we

have a years' worth of data!??? When Schizophrenia and Depression were given a

name, did the sufferers have to wait for relief until all the treatment

providers knew what they were doing according to one pratcitioners' protocol to

have a year of data to rule out a placebo effect? Maybe you don't fully

appreciate how life-sucking this disorder is. I am not casting aspersions: most

people who don't have it can't fully understand.

I do appreciate everything you have done to bring 4S/Miso to the public and to

bring us all together. Please know that. But I do get confused and concerned

at times about the Miso's only stance: Gordon is not a Misophonic.

He's an Aud. Perhaps if we allowed more discussion from different outside

sources and everyone could work together we would get further faster. A turf

war is not warranted here with so many of us suffering. Do you know what the

suicide rate is amongst 4S/Miso's?

> > > >

> > > >

> > > > 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]

Dr. J.I completely understand what you are saying but if we don't experiment or try, how will we ever know if it worked? has tried therapy, family therapy, group therapy, medications, EMDR light therapy and the long list goes on and on. (ly, most drs just wanted to medicate her and lock her up)We found out none of them worked. Do I regret trying those things? Some things no, some things YES. How will we know if nfb works if we don't try it. This is the beginning, we have to start somewhere with nfb. We are the guinea pigs. We have to be, for the kids of the future. Should we wait for the number of sufferers to increase? Should we wait 15 more years before we try it? No, because like you said, research takes years. How can we do the research if we don't try. You should be proud the sufferers are willing to help each other out and help find something that works. I didn't have years to wait for a cure, if 's depression

continued she may not have made it. With her case, we were talking life or death. I had to try something new. To our surprise, it is the first thing that is helping. To our surprise, it helping others too. On this forum, we have talked about others methods we are trying, not just nfb. I would like to think people will do their own reading about nfb before committing to it. I understand you don't want people to waste their money if it doesn't work, but we have already done that with so many other methods too. I have found someone who is willing to help my daughter and go out of the way for her. Heidi's dr and 's have already met with each other in person (not just over the phone) to discuss and learn about their condition and how to help. Of course we have to move forward with caution,

that's with anything we try in life. We have to welcome the new members with open arms and listen to what they have to say too. Maybe they have some new advise for us, as well. We learn from each other. This support group has helped me so much and I have learned so much here. I would be disappointed if we had to ban any discussions on this board. I feel at home here more than any other place. It's been a place of hope for me!!!! To: Soundsensitivity Sent: Sunday, July 22, 2012 2:00 AM Subject: Re: Neurofeedback questions

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

> >

> >

> > 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 can only tell you that I understand! Decades of misery and failed attempts at living a "normal" life!!!! This has been relentless, and I can only tell you that from my experience that it seems worse as I age. The ONLY thing keeping me alive is my ability find places to isolate and recover from uncomfortable and annoying situations. I stay very very busy in an effort to stay distracted but then lose the moment... Yes this is life sucking!Sent from my iPad

Thank you Dr J. Have any of the Misophonics being treated by the MMP been posting on this site? On any site? Have they been told to be quiet about the study until the facts are published? How were those people chosen for participation? I have been struggling to stay alive to find answers for 45 years and if anyone anywhere had told me I could have participated in any study (as at UCSD) I would have jumped at the chance to find even a modicum of relief. I always look for studies in my area (San Diego has a large research population) and have found nothing for the MMP. I would happily give my left ear for a placebo effect!!! If case-by-case is all we have at this point, that's OK. It's all we have. Do you think breast cancer patients have been told to wait until we have more information before they start treatment? And in the beginning of the AIDS epidemic, were people told to wait in the hall until we have a years' worth of data!??? When Schizophrenia and Depression were given a name, did the sufferers have to wait for relief until all the treatment providers knew what they were doing according to one pratcitioners' protocol to have a year of data to rule out a placebo effect? Maybe you don't fully appreciate how life-sucking this disorder is. I am not casting aspersions: most people who don't have it can't fully understand.

I do appreciate everything you have done to bring 4S/Miso to the public and to bring us all together. Please know that. But I do get confused and concerned at times about the Miso's only stance: Gordon is not a Misophonic. He's an Aud. Perhaps if we allowed more discussion from different outside sources and everyone could work together we would get further faster. A turf war is not warranted here with so many of us suffering. Do you know what the suicide rate is amongst 4S/Miso's?

> > > >

> > > >

> > > > 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]

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]

A very articulate and intelligent person has been thoroughly documenting his results with NFB and has claimed on this site numerous times to have been cured of Misophonia and his posts have been deleted!!!! This is unconscionable, unethical and downright sinister!!I am not happy about this at all. No one should be discouraged from trying something that looks this promising. For many years I contemplated suicide or at the very least putting out my ears. We will never know how many people have taken their lives because of this problem, and I believe that many probably have. I don't jump at anyone that promises a cure and I am very skeptical of the majority of claims of a

cure, since my experience has told me that they are useless in treating Miso. But we are seeing real results here being reported by reputable people. No one, especially on this, should discourage anything that looks this promising. If it does not work, then so be it. Mike To: Soundsensitivity Sent: Sunday, July 22, 2012 5:50 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 do not see where clyle has been " thoroughly documenting " anything.

He has not given us an update. Have the results held for the last five months?

He does not say.

He has come here to proclaim his success but also barely participates in this

group. He has no obligation whatsoever to participate, but I think it is mean of

him to come and proclaim his positive results without answering further

questions or giving ongoing information. The fact that nfb looks so promising

makes it all the more unfortunate that he is so stingy with 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]

Peach, Clyle53 has made three lengthy and detailed posts on NFB.

#20318: 1 May 2011

He described commencing NFB in Feb 2011 and the progress he made over 24

sessions.

#24453 8 Jan 2012

He described feeling close to completely cured after 112 NFB sessions, and the

progress made by his son. He expressed disappointment that only two people

showed interest in his earlier post. He also said his NFB doctor was willing to

correspond with other practioners regarding his protocols. There was more follow

up discussion to this post.

Then there was the lengthy 9 March 2012 post recently reposted by , which

is indeed no longer there. He updates on his progress one year on, and that of

his son.

Clyle53 has described his experiences in great detail, covering a period of over

a year, and encouraged others to try NFB to see if they have similar results. He

has conveyed Dr Lyle's permission for other NFB practitioners to contact him. He

has not been stingy with information at all - I'm not sure what more he can say.

Several others are now trying NFB and reporting back on their experiences. I for

one am following all these accounts with great interest, and appreciate the

contribution of all involved.

Liesa

> >

> >  A very articulate and intelligent person has been thoroughly documenting

his results with NFB and has claimed on this site numerous times to have been 

> > cured of Misophonia and his posts have been deleted!!!! 

> >

> > This is unconscionable, unethical and downright sinister!!

> >

> > I am not happy about this at all. No one should be discouraged from trying

something that looks this promising. For many years I contemplated suicide or 

> > at the very least putting out my ears. We will never know how many people

have taken their lives because of this problem, and I believe that many

probably 

> > have. I don't jump at anyone that promises a cure and I am very skeptical of

the majority of claims of a cure, since my experience has told me that they

are 

> > useless in treating Miso. 

> >

> > But we are seeing real results here being reported by reputable people. No

one, especially on this, should discourage anything that looks this promising. 

> > If it does not work, then so be it. 

> >

> > Mike 

[Guest guest]

I am afraid I disagree. Clyle is not a regular participant here. He pops in on

occasion, months apart, with weirdly long notes. They're awfully long for

someone who states that he doesn't want to participate much here and doesn't

even check his e-mail very often. Well, then why is he writing such long e-mails

on the very rare occasions he does post? There is no explanation that makes

sense to me. His last update was 4 to 5 months ago. He has not provided a

current update as of mid-July. Maybe you interpret this to be thorough

documentation, but to me, it is the opposite of thorough documentation. I place

much more credence in Heidi and Bernadette, who are regular participants here,

who answer questions, who keep everyone updated, and who are generous with their

thoughts.

>

> > >

> > >  A very articulate and intelligent person has been thoroughly documenting

his results with NFB and has claimed on this site numerous times to have been 

> > > cured of Misophonia and his posts have been deleted!!!! 

> > >

> > > This is unconscionable, unethical and downright sinister!!

> > >

> > > I am not happy about this at all. No one should be discouraged from trying

something that looks this promising. For many years I contemplated suicide or 

> > > at the very least putting out my ears. We will never know how many people

have taken their lives because of this problem, and I believe that many

probably 

> > > have. I don't jump at anyone that promises a cure and I am very skeptical

of the majority of claims of a cure, since my experience has told me that they

are 

> > > useless in treating Miso. 

> > >

> > > But we are seeing real results here being reported by reputable people. No

one, especially on this, should discourage anything that looks this promising. 

> > > If it does not work, then so be it. 

> > >

> > > Mike 

>

[Guest guest]

I can honestly say that in my 60 HORRIBLE years that suicide has crossed my mind! I know now that this Misophonia is genetic as I reflect on family. I am also aware of suicide in Great Uncles And Grand Fathers. I can now see how my Father suffered and all of us as he isolated himself, making our lives a living nightmare. I am not in a crisis now but a year ago before I retired and then moved into a small shed far away from all people I was!!!! I have only become aware of this condition a month but as I have said in earlier post just knowing helps. A year and a half ago I did the BrainState Training, very similar to NFB. It did help and I plan to do more. When I did do the Brain State I had no information about Misophonia,only that it seemed like it was something that might help me. So yes suicide, self abuse, self medicating, isolation are all on our backs!!!! We need to help ourselves and each other.Sent from my iPad

A very articulate and intelligent person has been thoroughly documenting his results with NFB and has claimed on this site numerous times to have been cured of Misophonia and his posts have been deleted!!!! This is unconscionable, unethical and downright sinister!!I am not happy about this at all. No one should be discouraged from trying something that looks this promising. For many years I contemplated suicide or at the very least putting out my ears. We will never know how many people have taken their lives because of this problem, and I believe that many probably have. I don't jump at anyone that promises a cure and I am very skeptical of the majority of claims of a

cure, since my experience has told me that they are useless in treating Miso. But we are seeing real results here being reported by reputable people. No one, especially on this, should discourage anything that looks this promising. If it does not work, then so be it. Mike To: Soundsensitivity Sent: Sunday, July 22, 2012 5:50 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]

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'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'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 completely agree with you Liesa. Clyle has been completely honest, open, detailed, and extremely helpful. Maybe newer members don't know this, but he was the catalyst for discussions on NFB treating miso. In my opinion it doesn't get much better than that! Giving hope to people is just about the best gift a person can give. How anyone can condem him for not posting more is beyond meAudrey To: Soundsensitivity Sent: Monday, July 23, 2012 4:26 AM Subject: Re: Neurofeedback questions

Peach, Clyle53 has made three lengthy and detailed posts on NFB.

#20318: 1 May 2011

He described commencing NFB in Feb 2011 and the progress he made over 24 sessions.

#24453 8 Jan 2012

He described feeling close to completely cured after 112 NFB sessions, and the progress made by his son. He expressed disappointment that only two people showed interest in his earlier post. He also said his NFB doctor was willing to correspond with other practioners regarding his protocols. There was more follow up discussion to this post.

Then there was the lengthy 9 March 2012 post recently reposted by , which is indeed no longer there. He updates on his progress one year on, and that of his son.

Clyle53 has described his experiences in great detail, covering a period of over a year, and encouraged others to try NFB to see if they have similar results. He has conveyed Dr Lyle's permission for other NFB practitioners to contact him. He has not been stingy with information at all - I'm not sure what more he can say. Several others are now trying NFB and reporting back on their experiences. I for one am following all these accounts with great interest, and appreciate the contribution of all involved.

Liesa

> >

> > Â A very articulate and intelligent person has been thoroughly documenting his results with NFB and has claimed on this site numerous times to have beenÂ

> > cured of Misophonia and his posts have been deleted!!!!Â

> >

> > This is unconscionable, unethical and downright sinister!!

> >

> > I am not happy about this at all. No one should be discouraged from trying something that looks this promising. For many years I contemplated suicide orÂ

> > at the very least putting out my ears. We will never know how many people have taken their lives because of this problem, and I believe that many probablyÂ

> > have. I don't jump at anyone that promises a cure and I am very skeptical of the majority of claims of a cure, since my experience has told me that they areÂ

> > useless in treating Miso.Â

> >

> > But we are seeing real results here being reported by reputable people. No one, especially on this, should discourage anything that looks this promising.Â

> > If it does not work, then so be it.Â

> >

> > MikeÂ

[Guest guest]

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 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]

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 have reread my 7/22/12 post and think I may have overreacted somewhat. But I would only change one word. I called the deletion of Clyles posts sinister. Maybe too harsh. But certainly some degree of negative intention appears to be behind it. I am at a loss as to why those posts were deleted and would love an explanation. At this point, no treatment has had any significant or permanent effect on Misophonia symptoms. Maybe at best an improvement in coping skills, but I don't think anyone has reported any real reduction in the rage, anger or discomfort associated with

triggers. Until someone comes along with something else that seems to work I will stay with NFB. It has been a life long quest for me personally to find a cure for this. If the few of us that are trying NFB are successful than we will have made a contribution to the Misophonia community on our own dime. I don't mind being a guinea pig for this cause. In the past, when I was not aware of how many people suffer with this, it was about finding a cure for myself and my daughter. Now I am much more motivatedand willing to spend the time and money if I know it could possibly help alleviate the suffering of hundreds of people. Can't think of a better cause than

that.Mike To: "Soundsensitivity " <Soundsensitivity > Sent: Sunday, July 22, 2012 8:33 PM Subject: Re: Re: Neurofeedback questions A very articulate and intelligent person has been thoroughly documenting his results with NFB and has claimed on this site numerous times to have been cured of Misophonia and his posts have been deleted!!!! This is unconscionable, unethical and downright sinister!!I am not happy about this at all. No one should be discouraged from trying something that looks this promising. For many years I contemplated suicide or at the very least putting out my ears. We will never know how many people have taken their lives because of this problem, and I believe that many probably have. I don't jump at anyone that promises a cure and I am very skeptical of the majority of claims of a

cure, since my experience has told me that they are useless in treating Miso. But we are seeing real results here being reported by reputable people. No one, especially on this, should discourage anything that looks this promising. If it does not work, then so be it. Mike To: Soundsensitivity Sent: Sunday, July 22, 2012 5:50 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]

Wow..glad to have read all this..makes me really think different about the intentions of this group...(creator, not users)Subject: Re: Re: Neurofeedback questionsTo: "Soundsensitivity " <Soundsensitivity >Date: Tuesday, July 24, 2012, 11:53 AM

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]

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]

So somebody tell me what the heck is going on?? For real!!! I'm reading this,,, what's the point in deleting our "stuff"???Sent from my iPad

Wow..glad to have read all this..makes me really think different about the intentions of this group...(creator, not users)Subject: Re: Re: Neurofeedback questionsTo: "Soundsensitivity " <Soundsensitivity >Date: Tuesday, July 24, 2012, 11:53 AM

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"

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>> > > > > > 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> > >> >>

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