RE: Age and otc/medication question

[Guest guest]

Kathy,

After reading your comment about psychiatrists and misophonia I have to agree. I get angry when I think about the times I asked them (I did go to several doctors trying to find out why I was not right in my mind, and if any one else complained of "sounds." I was told "No! Never heard of it." I felt like a defect and I have a son with the same problem.

I don't expect the psychiatric field to know every thing, but I was on so many different medications and I know if I were to walk into an office today with the same complaints I would be put on different medications to see if it helps my symptoms.

There is no question that the psychiatric field serves a purpose for so many reasons, and understand this is no ones fault. This is by no means trying to knock that field, but I do feel frustration for my son and I when I think about all the years wasted, and know that other people are going through what we are with the same results. More meds. Plus, they don't know what effects all this medication has on the brain of a young person. Will that cause a different kind of damage?

One of the best things for me to do is to keep moving forward with sites like this, in hopes the doctors can learn more of what this is and how it works.

To: Soundsensitivity Sent: Sat, November 26, 2011 10:18:57 PMSubject: RE: Re: Age and otc/medication question

Mu daughter had her first episode that I remember at around age14 and we were in the car and she had an aggressive response to me coughing...pounding on dash of car....on our way to a family members house. When we got there she was having what I have described as a drop attack....going limp...then came out of it and was pounding her fists again. She has epilepsy and I thought it was related to having some sort of seizure.

So, we took her to the ER and her heart rate was 150 when we first got there, but she was not having a seizure. That was when she was first diagnosed as having an anxiety response, but it took awhile before I made the connection between these episodes and a sound having been the trigger.

She was also having a very diffucult time at transitioning in to high school with a team of teachers that were not very understanding. So, she was having anxiety responses to stress at school then the Misophonia got increasingly worse.

So, eventually after a couple of years and after several ER visits, psych visits, and neuro visits she went on large does of Trileptal, max dose of Zoloft, and Clonidine and is no longer in high school and things are better...mostly due in part to meds, wearing her headphones and IPOD anytime we will be in public, and teaching ehr to communicate with me when she is in distress so we can get out of situations when her anxiety is building towards wanting to act out...so we can leave a situation before she becomes physical. So, in other words we have to orchestrate our lives to minimize this problem.

, I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I

am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

[Guest guest]

Mike-Thanks so much for the positive comments...I have to say that this has been a 6 year process to get to where we are now and not always with the most amount of patience, but where we are now minimizes the problem but also minimizes our life experiences as well.Unless we find a cure or more effective treatment option, this is what our life will be like for the foreseeable future.

, I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older,

but

I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

[Guest guest]

Mike-Thanks so much for the positive comments...I have to say that this has been a 6 year process to get to where we are now and not always with the most amount of patience, but where we are now minimizes the problem but also minimizes our life experiences as well.Unless we find a cure or more effective treatment option, this is what our life will be like for the foreseeable future.

, I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older,

but

I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

[Guest guest]

I agree that there are many people who benefit from seeing psychiatrists.  However, I just feel like there are many people in this group who have tried that route and it has helped no one, with the exception of some CBT.   I just want to start focusing on this condition as a physical cause and thereby get researched looking for this physical cause. I’m glad you and your son found this group so you can realize you’re not alone.  I felt the same way when my daughter first got this—no one in the medical community had ever heard of it.  And you should have seen the looks I got when I told them about this group—they just scoffed and said “you can’t believe everything that’s on the internet.â€â€”FRUSTRATING!! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of ParisSent: Sunday, November 27, 2011 8:38 AMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question Kathy, After reading your comment about psychiatrists and misophonia I have to agree. I get angry when I think about the times I asked them (I did go to several doctors trying to find out why I was not right in my mind, and if any one else complained of " sounds. " I was told " No! Never heard of it. " I felt like a defect and I have a son with the same problem. I don't expect the psychiatric field to know every thing, but I was on so many different medications and I know if I were to walk into an office today with the same complaints I would be put on different medications to see if it helps my symptoms. There is no question that the psychiatric field serves a purpose for so many reasons, and understand this is no ones fault. This is by no means trying to knock that field, but I do feel frustration for my son and I when I think about all the years wasted, and know that other people are going through what we are with the same results. More meds. Plus, they don't know what effects all this medication has on the brain of a young person. Will that cause a different kind of damage? One of the best things for me to do is to keep moving forward with sites like this, in hopes the doctors can learn more of what this is and how it works. To: Soundsensitivity Sent: Sat, November 26, 2011 10:18:57 PMSubject: RE: Re: Age and otc/medication question Mu daughter had her first episode that I remember at around age14 and we were in the car and she had an aggressive response to me coughing...pounding on dash of car....on our way to a family members house. When we got there she was having what I have described as a drop attack....going limp...then came out of it and was pounding her fists again. She has epilepsy and I thought it was related to having some sort of seizure. So, we took her to the ER and her heart rate was 150 when we first got there, but she was not having a seizure. That was when she was first diagnosed as having an anxiety response, but it took awhile before I made the connection between these episodes and a sound having been the trigger. She was also having a very diffucult time at transitioning in to high school with a team of teachers that were not very understanding. So, she was having anxiety responses to stress at school then the Misophonia got increasingly worse. So, eventually after a couple of years and after several ER visits, psych visits, and neuro visits she went on large does of Trileptal, max dose of Zoloft, and Clonidine and is no longer in high school and things are better...mostly due in part to meds, wearing her headphones and IPOD anytime we will be in public, and teaching ehr to communicate with me when she is in distress so we can get out of situations when her anxiety is building towards wanting to act out...so we can leave a situation before she becomes physical. So, in other words we have to orchestrate our lives to minimize this problem. , I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

[Guest guest]

I agree that there are many people who benefit from seeing psychiatrists.  However, I just feel like there are many people in this group who have tried that route and it has helped no one, with the exception of some CBT.   I just want to start focusing on this condition as a physical cause and thereby get researched looking for this physical cause. I’m glad you and your son found this group so you can realize you’re not alone.  I felt the same way when my daughter first got this—no one in the medical community had ever heard of it.  And you should have seen the looks I got when I told them about this group—they just scoffed and said “you can’t believe everything that’s on the internet.â€â€”FRUSTRATING!! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of ParisSent: Sunday, November 27, 2011 8:38 AMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question Kathy, After reading your comment about psychiatrists and misophonia I have to agree. I get angry when I think about the times I asked them (I did go to several doctors trying to find out why I was not right in my mind, and if any one else complained of " sounds. " I was told " No! Never heard of it. " I felt like a defect and I have a son with the same problem. I don't expect the psychiatric field to know every thing, but I was on so many different medications and I know if I were to walk into an office today with the same complaints I would be put on different medications to see if it helps my symptoms. There is no question that the psychiatric field serves a purpose for so many reasons, and understand this is no ones fault. This is by no means trying to knock that field, but I do feel frustration for my son and I when I think about all the years wasted, and know that other people are going through what we are with the same results. More meds. Plus, they don't know what effects all this medication has on the brain of a young person. Will that cause a different kind of damage? One of the best things for me to do is to keep moving forward with sites like this, in hopes the doctors can learn more of what this is and how it works. To: Soundsensitivity Sent: Sat, November 26, 2011 10:18:57 PMSubject: RE: Re: Age and otc/medication question Mu daughter had her first episode that I remember at around age14 and we were in the car and she had an aggressive response to me coughing...pounding on dash of car....on our way to a family members house. When we got there she was having what I have described as a drop attack....going limp...then came out of it and was pounding her fists again. She has epilepsy and I thought it was related to having some sort of seizure. So, we took her to the ER and her heart rate was 150 when we first got there, but she was not having a seizure. That was when she was first diagnosed as having an anxiety response, but it took awhile before I made the connection between these episodes and a sound having been the trigger. She was also having a very diffucult time at transitioning in to high school with a team of teachers that were not very understanding. So, she was having anxiety responses to stress at school then the Misophonia got increasingly worse. So, eventually after a couple of years and after several ER visits, psych visits, and neuro visits she went on large does of Trileptal, max dose of Zoloft, and Clonidine and is no longer in high school and things are better...mostly due in part to meds, wearing her headphones and IPOD anytime we will be in public, and teaching ehr to communicate with me when she is in distress so we can get out of situations when her anxiety is building towards wanting to act out...so we can leave a situation before she becomes physical. So, in other words we have to orchestrate our lives to minimize this problem. , I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

[Guest guest]

I-do-recall-reports-here-that-psychotropic-medicines-where-giving-some-people-here-some-relief,-myself-included.-Brain-chemistry-is-"physiological"-.Although-I-haven't-heard-of-anyone-having-significant-relief-other-than-from-addictive-drugs,-the-amount-of-relief-i-get-from-the-SSRI-is-worth-it-to-me-despite-side-effects,-because-my-4s-is-severely-affecting-my-life.-I-can-only-imagine-what-an-excruciating-choice-it-would-be-on-whether-to-put-a-child-on-medication.-I-imagine-the-choice-would-depend-greatly-on-just-how-severely-the-problem-is-affecting-their-life.I-heard-Temple-Grandin-say-that-very-little-research-has-been-done-on-sensory-processing-problems-unfortunately;-with-all-the-autism-now-there-should-be-a-lot-more.-But-my-psychiatrist-does-receive-all-information/articles-I-bring-him-with-great-interest-in-learning-more.-I-don't-expect-any-pill-to-cure-me-just-makes-it-easier-to-manage-the-symptoms-while-i-go-on-trying-to-get-along-in-life.-(This-is-just-me-reporting-my-experience,-not-a-medical-study;-just-anecdotal-information-as-they-say,-my-

personal-experiences-do-not-apply-to-or-represent-the-group-as-a-whole.)-I-very-much-understand-why-others-would-be-reluctant-to-go-on-medications-or-that-they-might-end-up-with-bad-experiences-from-meds;-been-there... To: Soundsensitivity Sent: Sunday, November 27, 2011 3:12 PM Subject: RE: Re: Age and otc/medication question

I agree that there are many people who benefit from seeing psychiatrists. However, I just feel like there are many people in this group who have tried that route and it has helped no one, with the exception of some CBT. I just want to start focusing on this condition as a physical cause and thereby get researched looking for this physical cause. I’m glad you and your son found this group so you can realize you’re not alone. I felt the same way when my daughter first got this—no one in the medical community had ever heard of it. And you should have seen the looks I got when

I told them about this group—they just scoffed and said “you can’t believe everything that’s on the internet.â€â€”FRUSTRATING!! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of ParisSent: Sunday, November 27, 2011 8:38 AMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question Kathy, After reading your comment about psychiatrists and misophonia I have to agree. I get angry when I think about the times I asked them (I did go to several doctors trying to find out why I was not right in my mind, and if any one else complained of "sounds." I was told "No! Never heard of it." I felt like a defect and I have a son with the same problem. I don't expect the psychiatric field to know every thing, but I was on so many different medications and I know if I were to walk into

an office today with the same complaints I would be put on different medications to see if it helps my symptoms. There is no question that the psychiatric field serves a purpose for so many reasons, and understand this is no ones fault. This is by no means trying to knock that field, but I do feel frustration for my son and I when I think about all the years wasted, and know that other people are going through what we are with the same results. More meds. Plus, they don't know what effects all this medication has on the brain of a young person. Will that cause a different kind of damage? One of the best things for me to do is to keep moving forward with sites like this, in hopes the doctors can learn more of what this is and how it works. From: Ward

To: Soundsensitivity Sent: Sat, November 26, 2011 10:18:57 PMSubject: RE: Re: Age and otc/medication question Mu daughter had her first episode that I remember at around age14 and we were in the car and she had an aggressive response to me coughing...pounding on dash of car....on our way to a family members house. When we got there she was having what I have described as a drop attack....going limp...then came out of it and was pounding her fists again. She has epilepsy and I thought it was related to having some sort of seizure. So, we took her to the ER and her heart rate was 150 when we first got there, but she was not having a seizure. That was when she was first diagnosed as having an anxiety response, but it took awhile before I made the connection between these episodes and a sound having been the trigger. She was also having a very diffucult time at transitioning in to high school with a team of teachers that were not very understanding. So, she was having anxiety responses to stress at school then the Misophonia got increasingly worse. So, eventually after a couple of years and after several ER visits, psych visits, and neuro visits she went on large does of Trileptal, max dose of Zoloft, and Clonidine and is

no longer in high school and things are better...mostly due in part to meds, wearing her headphones and IPOD anytime we will be in public, and teaching ehr to communicate with me when she is in distress so we can get out of situations when her anxiety is building towards wanting to act out...so we can leave a situation before she becomes physical. So, in other words we have to orchestrate our lives to minimize this problem. , I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without

headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

[Guest guest]

I just do not believe this is psychologically traumatic related. I did not have any trauma before it started. Also too many of my family members who I did not grow up with have it for it to be a coincidences. I wholeheartedly believe it's genetic and neurological and how we cope can then be psychological related. I do not believe the initial pain to these sounds is control based but after repeated pain we desire to control the noises just like any human would with something that causes them any sort of pain. Sent from my iPhoneHeidi

That is interesting. Does everyone remember having something traumatic happen to them in their life? I have.To: Soundsensitivity Sent: Wednesday, November 16, 2011 2:01 PMSubject: Re: Re: Age and otc/medication question

Rosemarie:When we went to the Dr, she said that earphones (that block all sound) and ear plugs actually make the 4S worse because it blocks out ALL sounds - and when you take them off the trigger noises are much more prominent - it also may have caused the mild hyperacussis that she just found my son to have. She said that by using the sound generators or an i-pod (or mp3 player) is better because it still allows you to hear what is going on around you - but more importantly it allows you to hear the trigger noises but to control it (dilute it w/sound) by adjusting the volume of the brown noise (white or pink) to a level that you can tolerate the trigger sounds. So that is why we are using the i-pod nano.It is as you said - the goal is to re-train your brain to tolerate the trigger noises and have them re-routed to the proper place in the brain (the non- threatening

area) - I'm not completely convinced it will work, but my son is trying it and one nite he actually sat at the dinner table w/his little brother (trigger person) close by (eating) and he was able to sit and finish his meal w/out any trigger noise incidents. The Dr. said it's baby steps - will be doing this for like a year (could be more could be less). Dr. says he'll probably NEVER like any of these sounds, but the goal is to get him to a tolerable place w/them. So we are trying it. My son who is 13 says he wants to try to help himself by using this plan.I'd like your thoughts on all of this - the dr also says that from what studies they have (her and Marsha and the core group of others) that this 4S/Misophonia is caused by something that may have happened in our lives - something tramatic or had a big impact on us - deep seated - and that this 4S/Miso is a manifestation of it and it's a control

thing. These are their theories - nothing written in stone yet....and the Dr. is actually using my son's info (minus names) in her studies w/Marsha and the rest of them.It's a crazy thing - and wish it wasn't so. Such suffering!!Thank you for sharing your situation with me - I have learned a lot from people such as yourself and the other group members.

, I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical

breakthrough will come. Not to minimize that I know it would be a

small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators!

I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.

It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly.

Sent from my iPhone

[Guest guest]

Heidi: " LIKE "

> >

> >>

> >> , I think the sound generators are supposed to help our brain retrain

itself to not react to sounds as threats. I don't understand it but after

prolonged use it is supposed to help. I am using them now. They are helpful in

situations where headphones aren't practical. They can enable you to drown out

some noises and still engage in conversations or situations where you need to

hear what is being said. They aren't a cure all by any means but have been

helpful to a degree. And with this condition any help that allows for an ability

to be a part of things is worth the money. We are tight on cash but to be able

to be out a little more with my husband and chdren, and talk to my husband

without headphones half on and half off so I could try to hear him, he also felt

it was well worth the cost. It is true the triggers seem to be more and more as

I have gotten older, but I am hopeful that perhaps some medical breakthrough

will come. Not to minimize that I know it would be a small thing for God to heal

me, but since He hasn't as I the case often with other illnesses I believe Him

that His grace is sufficient. I am very thankful for headphones, ear plugs and

now sound generators!

> >>

> >> I haven't seen anything on the effectiveness of sound generators after

prolonged use. I am curious how many have experience with this treatment after a

year or two.

> >>

> >> It was weird at first. I noticed that when I took them off immediately the

sensation was similar putting earplugs in. But it wasn't like the sounds were

gone and I adjusted back quickly.

> >>

> >> Sent from my iPhone

> >

> >

> >

> >

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[Guest guest]

I agree completely! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Monday, November 28, 2011 11:51 AMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question I just do not believe this is psychologically traumatic related. I did not have any trauma before it started. Also too many of my family members who I did not grow up with have it for it to be a coincidences. I wholeheartedly believe it's genetic and neurological and how we cope can then be psychological related. I do not believe the initial pain to these sounds is control based but after repeated pain we desire to control the noises just like any human would with something that causes them any sort of pain. Sent from my iPhoneHeidi That is interesting. Does everyone remember having something traumatic happen to them in their life? I have. To: Soundsensitivity Sent: Wednesday, November 16, 2011 2:01 PMSubject: Re: Re: Age and otc/medication question Rosemarie: When we went to the Dr, she said that earphones (that block all sound) and ear plugs actually make the 4S worse because it blocks out ALL sounds - and when you take them off the trigger noises are much more prominent - it also may have caused the mild hyperacussis that she just found my son to have. She said that by using the sound generators or an i-pod (or mp3 player) is better because it still allows you to hear what is going on around you - but more importantly it allows you to hear the trigger noises but to control it (dilute it w/sound) by adjusting the volume of the brown noise (white or pink) to a level that you can tolerate the trigger sounds. So that is why we are using the i-pod nano. It is as you said - the goal is to re-train your brain to tolerate the trigger noises and have them re-routed to the proper place in the brain (the non- threatening area) - I'm not completely convinced it will work, but my son is trying it and one nite he actually sat at the dinner table w/his little brother (trigger person) close by (eating) and he was able to sit and finish his meal w/out any trigger noise incidents. The Dr. said it's baby steps - will be doing this for like a year (could be more could be less). Dr. says he'll probably NEVER like any of these sounds, but the goal is to get him to a tolerable place w/them. So we are trying it. My son who is 13 says he wants to try to help himself by using this plan. I'd like your thoughts on all of this - the dr also says that from what studies they have (her and Marsha and the core group of others) that this 4S/Misophonia is caused by something that may have happened in our lives - something tramatic or had a big impact on us - deep seated - and that this 4S/Miso is a manifestation of it and it's a control thing. These are their theories - nothing written in stone yet....and the Dr. is actually using my son's info (minus names) in her studies w/Marsha and the rest of them. It's a crazy thing - and wish it wasn't so. Such suffering!! Thank you for sharing your situation with me - I have learned a lot from people such as yourself and the other group members. , I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

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I agree completely! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Monday, November 28, 2011 11:51 AMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question I just do not believe this is psychologically traumatic related. I did not have any trauma before it started. Also too many of my family members who I did not grow up with have it for it to be a coincidences. I wholeheartedly believe it's genetic and neurological and how we cope can then be psychological related. I do not believe the initial pain to these sounds is control based but after repeated pain we desire to control the noises just like any human would with something that causes them any sort of pain. Sent from my iPhoneHeidi That is interesting. Does everyone remember having something traumatic happen to them in their life? I have. To: Soundsensitivity Sent: Wednesday, November 16, 2011 2:01 PMSubject: Re: Re: Age and otc/medication question Rosemarie: When we went to the Dr, she said that earphones (that block all sound) and ear plugs actually make the 4S worse because it blocks out ALL sounds - and when you take them off the trigger noises are much more prominent - it also may have caused the mild hyperacussis that she just found my son to have. She said that by using the sound generators or an i-pod (or mp3 player) is better because it still allows you to hear what is going on around you - but more importantly it allows you to hear the trigger noises but to control it (dilute it w/sound) by adjusting the volume of the brown noise (white or pink) to a level that you can tolerate the trigger sounds. So that is why we are using the i-pod nano. It is as you said - the goal is to re-train your brain to tolerate the trigger noises and have them re-routed to the proper place in the brain (the non- threatening area) - I'm not completely convinced it will work, but my son is trying it and one nite he actually sat at the dinner table w/his little brother (trigger person) close by (eating) and he was able to sit and finish his meal w/out any trigger noise incidents. The Dr. said it's baby steps - will be doing this for like a year (could be more could be less). Dr. says he'll probably NEVER like any of these sounds, but the goal is to get him to a tolerable place w/them. So we are trying it. My son who is 13 says he wants to try to help himself by using this plan. I'd like your thoughts on all of this - the dr also says that from what studies they have (her and Marsha and the core group of others) that this 4S/Misophonia is caused by something that may have happened in our lives - something tramatic or had a big impact on us - deep seated - and that this 4S/Miso is a manifestation of it and it's a control thing. These are their theories - nothing written in stone yet....and the Dr. is actually using my son's info (minus names) in her studies w/Marsha and the rest of them. It's a crazy thing - and wish it wasn't so. Such suffering!! Thank you for sharing your situation with me - I have learned a lot from people such as yourself and the other group members. , I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly. Sent from my iPhone

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I agree completely. I feel like most doctor's don't want to look into this - almost like they don't want to waste their time or something. To: Soundsensitivity Sent: Sunday, November 27, 2011 4:12 PM Subject: RE: Re: Age and otc/medication question

I agree that there are many people who benefit from seeing psychiatrists. However, I just feel like there are many people in this group who have tried that route and it has helped no one, with the exception of some CBT. I just want to start focusing on this condition as a physical cause and thereby get researched looking for this physical cause. I’m glad you and your son found this group so you can realize you’re not alone. I felt the same way when my daughter first got this—no one in the medical community had ever heard of it. And you should have seen the looks I got when I told them about this

group—they just scoffed and said “you can’t believe everything that’s on the internet.â€â€”FRUSTRATING!! From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of ParisSent: Sunday, November 27, 2011 8:38 AMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question Kathy, After reading your comment about psychiatrists and misophonia I have to agree. I get angry when I think about the times I asked them (I did go to several doctors trying to find out why I was not right in my mind, and if any one else complained of "sounds." I was told "No! Never heard of it." I felt like a defect and I have a son with the same problem. I don't expect the psychiatric field to know every thing, but I was on so many different medications and I know if I were to walk into an office today with the same

complaints I would be put on different medications to see if it helps my symptoms. There is no question that the psychiatric field serves a purpose for so many reasons, and understand this is no ones fault. This is by no means trying to knock that field, but I do feel frustration for my son and I when I think about all the years wasted, and know that other people are going through what we are with the same results. More meds. Plus, they don't know what effects all this medication has on the brain of a young person. Will that cause a different kind of damage? One of the best things for me to do is to keep moving forward with sites like this, in hopes the doctors can learn more of what this is and how it works. To:

Soundsensitivity Sent: Sat, November 26, 2011 10:18:57 PMSubject: RE: Re: Age and otc/medication question Mu daughter had her first episode that I remember at around age14 and we were in the car and she had an aggressive response to me coughing...pounding on dash of car....on our way to a family members house. When we got there she was having what I have described as a drop attack....going limp...then came out of it and was pounding her fists again. She has epilepsy and I thought it was related to having some sort of seizure. So, we took her to the ER and her heart

rate was 150 when we first got there, but she was not having a seizure. That was when she was first diagnosed as having an anxiety response, but it took awhile before I made the connection between these episodes and a sound having been the trigger. She was also having a very diffucult time at transitioning in to high school with a team of teachers that were not very understanding. So, she was having anxiety responses to stress at school then the Misophonia got increasingly worse. So, eventually after a couple of years and after several ER visits, psych visits, and neuro visits she went on large does of Trileptal, max dose of Zoloft, and Clonidine and is no longer in high school and things are better...mostly due in part to

meds, wearing her headphones and IPOD anytime we will be in public, and teaching ehr to communicate with me when she is in distress so we can get out of situations when her anxiety is building towards wanting to act out...so we can leave a situation before she becomes physical. So, in other words we have to orchestrate our lives to minimize this problem. , I think the sound generators are supposed to help our brain retrain itself to not react to sounds as threats. I don't understand it but after prolonged use it is supposed to help. I am using them now. They are helpful in situations where headphones aren't practical. They can enable you to drown out some noises and still engage in conversations or situations where you need to hear what is being said. They aren't a cure all by any means but have been helpful to a degree. And with this condition any help that allows for an ability to be a part of things is worth the money. We are tight on cash

but to be able to be out a little more with my husband and chdren, and talk to my husband without headphones half on and half off so I could try to hear him, he also felt it was well worth the cost. It is true the triggers seem to be more and more as I have gotten older, but I am hopeful that perhaps some medical breakthrough will come. Not to minimize that I know it would be a small thing for God to heal me, but since He hasn't as I the case often with other illnesses I believe Him that His grace is sufficient. I am very thankful for headphones, ear plugs and now sound generators! I haven't seen anything on the effectiveness of sound generators after prolonged use. I am curious how many have experience with this treatment after a year or two.It was weird at first. I noticed that when I took them off immediately the sensation was similar putting earplugs in. But it wasn't like the sounds were gone and I adjusted back quickly.

Sent from my iPhone