RE: Age and otc/medication question

[Guest guest]

I’m not sure why people think that it is rarer after 50. It seems that since the Today Show aired its segment on Misophonia, more than half the new people that have found the group are over 50. I think that maybe older people were less likely to Google and find the group on their own, so we thought it wasn’t as common the older you got. But a lot of older people watch the Today Show and thereby found us that way. I don’t think it matters what age you are—you have it for life. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Sent: Tuesday, November 15, 2011 3:45 PMTo: Soundsensitivity Subject: Age and otc/medication question Is anyone out there older than 50? The reason why I'm asking is I understand after 50 the cases become rarer, though I am 54 and things have not gotten any better. Also, could this be caused by a medication, whether prescribed or over the counter, the mom was taking while carrying the child?

[Guest guest]

I'm 57. It hasn't gone away or lessened. I'm SO looking forward to retiring, when we will move to a place far from people, barking dogs, and traffic.

I'm almost 70. I don't know why people think it goes away. I have better coping skills and more resources, but I still have many triggers.

>

>

> Is anyone out there older than 50? The reason why I'm asking is I

> understand after 50 the cases become rarer, though I am 54 and things

> have not gotten any better.

>

> Also, could this be caused by a medication, whether prescribed or over

> the counter, the mom was taking while carrying the child?

>

[Guest guest]

I didn't realize that. I must have misunderstood what I read, but I'm glad to know otherwise. Thank you.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:32:12 PMSubject: RE: Age and otc/medication question

I’m not sure why people think that it is rarer after 50. It seems that since the Today Show aired its segment on Misophonia, more than half the new people that have found the group are over 50. I think that maybe older people were less likely to Google and find the group on their own, so we thought it wasn’t as common the older you got. But a lot of older people watch the Today Show and thereby found us that way. I don’t think it matters what age you are—you have it for life

[Guest guest]

He'll be ok because he has you as support. I don't see how it can fail. It might not seem to matter when he's in a triggered episode, but it does make a difference afterward. I can see that, finally, with my son who is 28. I always worry, but when I step back and think of how it was and where he's at now, he's doing well, living his life and making changes to help it be an easier flow.

To: Soundsensitivity Sent: Tue, November 15, 2011 9:57:01 PMSubject: Re: Age and otc/medication question

for now, he only needs the Nano at home - school (so far) has been ok.

I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned.

I brought my son to a 4S/Misophonia Dr. last week - she had some "sound generators" that looked like hearing aides. They have "white noise" that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son.

I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure.

That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else...

It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question

I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

Any chance insurances would cover these with a proper diagnosis label?Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----To: " Soundsensitivity " <Soundsensitivity >Subject: Age and otc/medication questionDate: Tue, Nov 15, 2011 10:54 pm I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned. I brought my son to a 4S/Misophonia Dr. last week - she had some "sound generators" that looked like hearing aides. They have "white noise" that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son. I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure. That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else... It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time.To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

, 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]

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]

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]

Mike,

First, Happy Birthday to you! Next, you certainly give me, and any one reading this hope!

I do believe faith has a lot to do with hanging in there, helping to keep our heads above water. I do feel there's a reason for most things, we just might not understand it at the time.

You're a very fortunate man, and I wish you the best for your Birthday and years to come!

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, November 16, 2011 6:11:12 AMSubject: Re: Age and otc/medication question

HI ,

I will turn 60 on Tuesday. It has been a long haul and I have had it now for about 55 years.

The sounds still bother me about as much as they always have, but I am calmer now and happier and not as trapped in situations as I was when I was younger. I had to keep my jobs, go to school and had a house full of people. Plus I have more control of myself and my circumstances than I did then. I am not as timid and afraid of people and life. Quite the contrary now.

I attribute much of that to dedicated intense daily exercise, very healthy diet plus suppliments,no caffene, tobacco, or alcohol or any prescription medications. And years of therapy.

Also a wonderful, loving woman that I was blessed to find. I would have to say prayer and faith in a loving God has also played a big part.

It has taken a combination of elements to make my life livable, rich and meaningful, despite this horrible condition.

Wish you the best,

Mike

To: Soundsensitivity Sent: Tuesday, November 15, 2011 12:45 PMSubject: Age and otc/medication question

Is anyone out there older than 50? The reason why I'm asking is I understand after 50 the cases become rarer, though I am 54 and things have not gotten any better.

Also, could this be caused by a medication, whether prescribed or over the counter, the mom was taking while carrying the child?

[Guest guest]

Thank you ,

And I wish the best for you as well.

This does not have to ruin our lives if we don't let it.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 1:33 PMSubject: Re: Age and otc/medication question

Mike,

First, Happy Birthday to you! Next, you certainly give me, and any one reading this hope!

I do believe faith has a lot to do with hanging in there, helping to keep our heads above water. I do feel there's a reason for most things, we just might not understand it at the time.

You're a very fortunate man, and I wish you the best for your Birthday and years to come!

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, November 16, 2011 6:11:12 AMSubject: Re: Age and otc/medication question

HI ,

I will turn 60 on Tuesday. It has been a long haul and I have had it now for about 55 years.

The sounds still bother me about as much as they always have, but I am calmer now and happier and not as trapped in situations as I was when I was younger. I had to keep my jobs, go to school and had a house full of people. Plus I have more control of myself and my circumstances than I did then. I am not as timid and afraid of people and life. Quite the contrary now.

I attribute much of that to dedicated intense daily exercise, very healthy diet plus suppliments,no caffene, tobacco, or alcohol or any prescription medications. And years of therapy.

Also a wonderful, loving woman that I was blessed to find. I would have to say prayer and faith in a loving God has also played a big part.

It has taken a combination of elements to make my life livable, rich and meaningful, despite this horrible condition.

Wish you the best,

Mike

To: Soundsensitivity Sent: Tuesday, November 15, 2011 12:45 PMSubject: Age and otc/medication question

Is anyone out there older than 50? The reason why I'm asking is I understand after 50 the cases become rarer, though I am 54 and things have not gotten any better.

Also, could this be caused by a medication, whether prescribed or over the counter, the mom was taking while carrying the child?

[Guest guest]

Yes, Mike, I also appreciated your thoughtful comments on how far you've come.  I am 60, and although on many levels, I am calmer and understand the world much better now, I know that I don't have to feel trapped.  I can walk away in many cases, turn on the brown noise, or simply put things in perspective so I don't feel that fight or flight mechanism kick in.  

Thank you for your articulate words.  Like , I'm also inspired by what you have contributed.  More than anything, I'm just grateful for this forum so I don't feel like I'm running solo out here.  

Best wishes to you, Mike...and , too.Ginny

 

Thank you ,

 

And I wish the best for you as well.

This does not have to ruin our lives if we don't let it.

 

Mike

 

 

To: Soundsensitivity Sent: Wednesday, November 16, 2011 1:33 PM

Subject: Re: Age and otc/medication question

 

Mike,

 

First, Happy Birthday to you! Next, you certainly give me, and any one reading this hope! 

 

I do believe faith has a lot to do with hanging in there, helping to keep our heads above water.  I do feel there's a reason for most things, we just might not understand it at the time.

 

You're a very fortunate man, and I wish you the best for your Birthday and years to come!

 

To: " Soundsensitivity " <Soundsensitivity >

Sent: Wed, November 16, 2011 6:11:12 AMSubject: Re: Age and otc/medication question 

HI ,

I will turn 60 on Tuesday. It has been a long haul and I have had it now for about 55 years.

The sounds still bother me about as much as they always have, but I am calmer now and happier and not as trapped in situations as I was when I was younger. I had to keep my jobs, go to school and had a house full of people. Plus I have more control of myself and my circumstances than I did then. I am not as timid and afraid of people and life. Quite the contrary now. 

I attribute much of that to dedicated intense daily exercise, very healthy diet plus suppliments,no caffene, tobacco, or alcohol or any prescription medications. And years of therapy.

Also a wonderful, loving woman that I was blessed to find.  I would have to say prayer and faith in a loving God has also played a big part.

It has taken a combination of elements to make my life livable, rich and meaningful, despite this horrible condition.

Wish you the best,

Mike

 

 

 

To: Soundsensitivity Sent: Tuesday, November 15, 2011 12:45 PM

Subject: Age and otc/medication question

 

Is anyone out there older than 50?  The reason why I'm asking is I understand after 50 the cases become rarer, though I am 54 and things have not gotten any better. 

Also, could this be caused by a medication, whether prescribed or over the counter, the mom was taking while carrying the child?

[Guest guest]

Thank you, Ginny! I feel the same way about this forum. It's as if I found a community of people that I have something in common with, where for most of my life I felt like a high strung nervous odd ball. Plus, there is a wealth of information! Because this site is new to me every time I read someones message there's either something to learn, or it's a feeling that I am not alone. Amazing!

Best wishes to you, too!

To: Soundsensitivity Sent: Wed, November 16, 2011 6:03:17 PMSubject: Re: Age and otc/medication question

Yes, Mike, I also appreciated your thoughtful comments on how far you've come. I am 60, and although on many levels, I am calmer and understand the world much better now, I know that I don't have to feel trapped. I can walk away in many cases, turn on the brown noise, or simply put things in perspective so I don't feel that fight or flight mechanism kick in.

Thank you for your articulate words. Like , I'm also inspired by what you have contributed. More than anything, I'm just grateful for this forum so I don't feel like I'm running solo out here.

Best wishes to you, Mike...and , too.

Ginny

Thank you ,

And I wish the best for you as well.

This does not have to ruin our lives if we don't let it.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 1:33 PM Subject: Re: Age and otc/medication question

Mike,

First, Happy Birthday to you! Next, you certainly give me, and any one reading this hope!

I do believe faith has a lot to do with hanging in there, helping to keep our heads above water. I do feel there's a reason for most things, we just might not understand it at the time.

You're a very fortunate man, and I wish you the best for your Birthday and years to come!

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, November 16, 2011 6:11:12 AMSubject: Re: Age and otc/medication

question

HI ,

I will turn 60 on Tuesday. It has been a long haul and I have had it now for about 55 years.

The sounds still bother me about as much as they always have, but I am calmer now and happier and not as trapped in situations as I was when I was younger. I had to keep my jobs, go to school and had a house full of people. Plus I have more control of myself and my circumstances than I did then. I am not as timid and afraid of people and life. Quite the contrary now.

I attribute much of that to dedicated intense daily exercise, very healthy diet plus suppliments,no caffene, tobacco, or alcohol or any prescription medications. And years of therapy.

Also a wonderful, loving woman that I was blessed to find. I would have to say prayer and faith in a loving God has also played a big part.

It has taken a combination of elements to make my life livable, rich and meaningful, despite this horrible condition.

Wish you the best,

Mike

To: Soundsensitivity Sent: Tuesday, November 15, 2011 12:45 PMSubject: Age and otc/medication question

Is anyone out there older than 50? The reason why I'm asking is I understand after 50 the cases become rarer, though I am 54 and things have not gotten any better.

Also, could this be caused by a medication, whether prescribed or over the counter, the mom was taking while carrying the child?

[Guest guest]

Thanks Ginny,

I wish I had had this forum years ago. It was such a lonely road to travel alone but could be so much easier with the help and support of others. Just feeling hopeful makes this not so bad.

At what age did this start for you? I was around 5 when it started. My mother had it too.

I use the brown noise when I am on my computer. Very soothing. And on my iphone and ipod too.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 4:03 PMSubject: Re: Age and otc/medication question

Yes, Mike, I also appreciated your thoughtful comments on how far you've come. I am 60, and although on many levels, I am calmer and understand the world much better now, I know that I don't have to feel trapped. I can walk away in many cases, turn on the brown noise, or simply put things in perspective so I don't feel that fight or flight mechanism kick in.

Thank you for your articulate words. Like , I'm also inspired by what you have contributed. More than anything, I'm just grateful for this forum so I don't feel like I'm running solo out here.

Best wishes to you, Mike...and , too.

Ginny

Thank you ,

And I wish the best for you as well.

This does not have to ruin our lives if we don't let it.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 1:33 PM

Subject: Re: Age and otc/medication question

Mike,

First, Happy Birthday to you! Next, you certainly give me, and any one reading this hope!

I do believe faith has a lot to do with hanging in there, helping to keep our heads above water. I do feel there's a reason for most things, we just might not understand it at the time.

You're a very fortunate man, and I wish you the best for your Birthday and years to come!

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, November 16, 2011 6:11:12 AMSubject: Re: Age and otc/medication

question

HI ,

I will turn 60 on Tuesday. It has been a long haul and I have had it now for about 55 years.

The sounds still bother me about as much as they always have, but I am calmer now and happier and not as trapped in situations as I was when I was younger. I had to keep my jobs, go to school and had a house full of people. Plus I have more control of myself and my circumstances than I did then. I am not as timid and afraid of people and life. Quite the contrary now.

I attribute much of that to dedicated intense daily exercise, very healthy diet plus suppliments,no caffene, tobacco, or alcohol or any prescription medications. And years of therapy.

Also a wonderful, loving woman that I was blessed to find. I would have to say prayer and faith in a loving God has also played a big part.

It has taken a combination of elements to make my life livable, rich and meaningful, despite this horrible condition.

Wish you the best,

Mike

To: Soundsensitivity Sent: Tuesday, November 15, 2011 12:45 PMSubject: Age and otc/medication question

Is anyone out there older than 50? The reason why I'm asking is I understand after 50 the cases become rarer, though I am 54 and things have not gotten any better.

Also, could this be caused by a medication, whether prescribed or over the counter, the mom was taking while carrying the child?

[Guest guest]

I have noticed that quite a few people even before the Today show aired were in their 50's. Maybe because we have lived with it so long we are going crazy and looking for answersTo: Soundsensitivity Sent: Tuesday, November 15, 2011 7:55 PMSubject: Re: Age and otc/medication question

I didn't realize that. I must have misunderstood what I read, but I'm glad to know otherwise. Thank you.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:32:12 PMSubject: RE: Age and otc/medication question

I’m not sure why people think that it is rarer after 50. It seems that since the Today Show aired its segment on Misophonia, more than half the new people that have found the group are over 50. I think that maybe older people were less likely to Google and find the group on their own, so we thought it wasn’t as common the older you got. But a lot of older people watch the Today Show and thereby found us that way. I don’t think it matters what age you are—you have it for life

[Guest guest]

I feel bad that you went through such a horrible childhood.  However, I don’t believe that this condition is a psychological response to traumatic events.  My child has misophonia and had a very innocent and happy childhood.  I think that you might have PTSD, and you also have misophonia, but they aren’t related. Just my feeling about it. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Sent: Wednesday, November 16, 2011 3:58 PMTo: Soundsensitivity Cc: Soundsensitivity Subject: Re: Re: Age and otc/medication question I have. I believe I have this from my childhood. When I was young I would hear my parents fighting. My dad would hit her. Being so little and probably sleeping in bed. I would just hear what was happening and didn't understand. But I would wait for the noises. I was diagnosed with PTSD. Lagrasta 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]

Lou-Ellen,

I think you are right! But, it feels good to know this is out there. I never, in my whole life, thought I would ever get an answer to this. Ever. And out of the blue it came.

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, November 16, 2011 8:27:42 PMSubject: Re: Age and otc/medication question

I have noticed that quite a few people even before the Today show aired were in their 50's. Maybe because we have lived with it so long we are going crazy and looking for answers

To: Soundsensitivity Sent: Tuesday, November 15, 2011 7:55 PMSubject: Re: Age and otc/medication question

I didn't realize that. I must have misunderstood what I read, but I'm glad to know otherwise. Thank you.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:32:12 PMSubject: RE: Age and otc/medication question

I’m not sure why people think that it is rarer after 50. It seems that since the Today Show aired its segment on Misophonia, more than half the new people that have found the group are over 50. I think that maybe older people were less likely to Google and find the group on their own, so we thought it wasn’t as common the older you got. But a lot of older people watch the Today Show and thereby found us that way. I don’t think it matters what age you are—you have it for life

[Guest guest]

Kathy and :

Is it possible it could be "nurture vs nature?" At times a combination of the two?

To: Soundsensitivity Sent: Wed, November 16, 2011 9:22:38 PMSubject: RE: Re: Age and otc/medication question

I feel bad that you went through such a horrible childhood. However, I don’t believe that this condition is a psychological response to traumatic events. My child has misophonia and had a very innocent and happy childhood. I think that you might have PTSD, and you also have misophonia, but they aren’t related.

Just my feeling about it.

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Sent: Wednesday, November 16, 2011 3:58 PMTo: Soundsensitivity Cc: Soundsensitivity Subject: Re: Re: Age and otc/medication question

I have. I believe I have this from my childhood. When I was young I would hear my parents fighting. My dad would hit her. Being so little and probably sleeping in bed. I would just hear what was happening and didn't understand. But I would wait for the noises. I was diagnosed with PTSD. Lagrasta

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]

They have a wireless noise canceling headphones out now but of course they are very large and conspicuous. Good on airplanes and other situations.

But if they have that technology then I would imagine that a wireless earbud is not too far off. Then one could play a white noise app from an ipod or iphone that

would just look like hearing aids and the cost would be minimal. I am waiting for that . I am going to google it now and see what I can find.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 5:29 AMSubject: Re: Age and otc/medication question

Any chance insurances would cover these with a proper diagnosis label?Sent from my HTC smartphone on the Now Network from Sprint!

----- Reply message -----To: "Soundsensitivity " <Soundsensitivity >Subject: Age and otc/medication questionDate: Tue, Nov 15, 2011 10:54 pm

I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned.

I brought my son to a 4S/Misophonia Dr. last week - she had some "sound generators" that looked like hearing aides. They have "white noise" that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son.

I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure.

That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else...

It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question

I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

They have a wireless noise canceling headphones out now but of course they are very large and conspicuous. Good on airplanes and other situations.

But if they have that technology then I would imagine that a wireless earbud is not too far off. Then one could play a white noise app from an ipod or iphone that

would just look like hearing aids and the cost would be minimal. I am waiting for that . I am going to google it now and see what I can find.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 5:29 AMSubject: Re: Age and otc/medication question

Any chance insurances would cover these with a proper diagnosis label?Sent from my HTC smartphone on the Now Network from Sprint!

----- Reply message -----To: "Soundsensitivity " <Soundsensitivity >Subject: Age and otc/medication questionDate: Tue, Nov 15, 2011 10:54 pm

I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned.

I brought my son to a 4S/Misophonia Dr. last week - she had some "sound generators" that looked like hearing aides. They have "white noise" that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son.

I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure.

That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else...

It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question

I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

That would be wonderful! I can see someone working on something like that. If they have hearing aide to make sound clearer they can possible make them to help mute the sounds, and it not cost thousands of dollars.

To: "Soundsensitivity " <Soundsensitivity >Sent: Thu, November 17, 2011 3:42:53 AMSubject: Re: Age and otc/medication question

They have a wireless noise canceling headphones out now but of course they are very large and conspicuous. Good on airplanes and other situations.

But if they have that technology then I would imagine that a wireless earbud is not too far off. Then one could play a white noise app from an ipod or iphone that

would just look like hearing aids and the cost would be minimal. I am waiting for that . I am going to google it now and see what I can find.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 5:29 AMSubject: Re: Age and otc/medication question

Any chance insurances would cover these with a proper diagnosis label?Sent from my HTC smartphone on the Now Network from Sprint!

----- Reply message -----To: "Soundsensitivity " <Soundsensitivity >Subject: Age and otc/medication questionDate: Tue, Nov 15, 2011 10:54 pm

I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned.

I brought my son to a 4S/Misophonia Dr. last week - she had some "sound generators" that looked like hearing aides. They have "white noise" that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son.

I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure.

That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else...

It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question

I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

That would be wonderful! I can see someone working on something like that. If they have hearing aide to make sound clearer they can possible make them to help mute the sounds, and it not cost thousands of dollars.

To: "Soundsensitivity " <Soundsensitivity >Sent: Thu, November 17, 2011 3:42:53 AMSubject: Re: Age and otc/medication question

They have a wireless noise canceling headphones out now but of course they are very large and conspicuous. Good on airplanes and other situations.

But if they have that technology then I would imagine that a wireless earbud is not too far off. Then one could play a white noise app from an ipod or iphone that

would just look like hearing aids and the cost would be minimal. I am waiting for that . I am going to google it now and see what I can find.

Mike

To: Soundsensitivity Sent: Wednesday, November 16, 2011 5:29 AMSubject: Re: Age and otc/medication question

Any chance insurances would cover these with a proper diagnosis label?Sent from my HTC smartphone on the Now Network from Sprint!

----- Reply message -----To: "Soundsensitivity " <Soundsensitivity >Subject: Age and otc/medication questionDate: Tue, Nov 15, 2011 10:54 pm

I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned.

I brought my son to a 4S/Misophonia Dr. last week - she had some "sound generators" that looked like hearing aides. They have "white noise" that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son.

I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure.

That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else...

It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time.

To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question

I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

My insurance reimbursed me back when we bought them.  It was for durable medical goods or something like that. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of kaciv@...Sent: Wednesday, November 16, 2011 8:29 AMTo: Soundsensitivity Subject: Re: Age and otc/medication question Any chance insurances would cover these with a proper diagnosis label?Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----To: " Soundsensitivity " <Soundsensitivity >Subject: Age and otc/medication questionDate: Tue, Nov 15, 2011 10:54 pm I never knew that such a thing as those sound generators for your ears existed. Back when I was dealing with classroom and office sound agony, I would have gone out of my way to find the money for a pair. The difficulty with an iPod is that it gives people the impression that you are not paying attention, either at work or in class. The ear pieces that look like hearing aids would not be questioned. I brought my son to a 4S/Misophonia Dr. last week - she had some " sound generators " that looked like hearing aides. They have " white noise " that you can adjust the volume in your ear to dilute or drown out trigger noises. They were not cheap though $2,500 per pair. We opted for the Apple Nano - (mini iPod) for my son. I wonder if hearing aides of some sort would be of help. I work used to work with Deaf and Hard of Hearing children as an aide, and I always wondered if they couldn't do something that would turn down the sound, or mute it some way. I thought I read somewhere that some thing like that was being made??? Not sure. That has to be very difficult for you not being able to leave the controlled environment when you would like to without being prepared, but it sounds like you have it under control the best that you can and it's working for you. I always tell myself, if it's not this it would be something else... It's like there is a whole community of people with this disorder. But, it's so new in the medical community, even we know first hand it's been around for a long, long time. To: Soundsensitivity Sent: Tue, November 15, 2011 7:11:59 PMSubject: Re: Age and otc/medication question I'm 53 now and I'm more sensitive than ever. It's gotten worse and triggers get added over the years. I avoid much of the rage because I do not leave the house unless necessary or if I'm feeling up to it. (Husband supports us and I do help in our office as needed seasonally but it's excruciating.) I have earplugs now that I wear around my neck so I can get them in/out as needed when working on our property (one acre of fruit trees and beauty). I try try try to not let this control my life but I'm afraid it's winning.I've been researching for a few years now and have ruled out pre-natal stuff including nicotine, quinine and alcohol. I know my father had it and his childhood was so much different than mine, except for we both endured the wrath of an enraged misophonic father. Mother was not misophonic. >> > Is anyone out there older than 50? The reason why I'm asking is I> understand after 50 the cases become rarer, though I am 54 and things> have not gotten any better.> > Also, could this be caused by a medication, whether prescribed or over> the counter, the mom was taking while carrying the child?>

[Guest guest]

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]

Kathy, I wholeheartedly agree with everything you just said. HeidiSent from my iPhone

I believe it is a physical/neurological malfunction and then psychological overlays happen as a person endures being tortured and try to protect themselves, and also as they get ostracized by family and friends, or even abused because of it. Our family has been very understanding and accommodating to my daughter and her condition. I think this has helped keep the psychological effects to her low because she knows it’s not her fault and it is a physical issue. She is still frustrated and has problems with sounds, but she deals with it much better than she used to. We were very fortunate to have found out what it was 5 months after she first started to have symptoms. I believe it is physical/neurological because there are so many in this group who have had relatives that have it also—and they didn’t know until recently (so it wasn’t “learnedâ€). It definitely seems to have a genetic component. One person had a daughter who he was estranged from, and just reunited with her at age 17 and found out she suffers with misophonia too. Plus, it seems to start around the same age and come on overnight with all very similar triggers. We just really need research! As far as people who were abused, or had psychological trauma and you think misophonia is related to this PTSD, I think that it is just a sad coincidence that you have misophonia and also had a trauma—I don’t think they are related. However, it always gives psychiatrists a great reason for the misophonia because they refuse to believe that anything strange like this could have a physical basis. This is just my opinion and what I have concluded from reading posts on this site for the last 6 years. I could be wrong, but I don’t believe a happy little 8 year old can all of a sudden become so afraid of someone chewing gum that she can no longer enjoy life with her family and friends. And then cry herself to sleep every night wishing she could just be normal again. Something changed in her—something in her ear or brain(neurologically)??? But I don’t think it was in her psyche. Kathy Howe From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of ParisSent: Wednesday, November 16, 2011 10:46 PMTo: Soundsensitivity Subject: Re: Re: Age and otc/medication question Kathy and : Is it possible it could be "nurture vs nature?" At times a combination of the two? To: Soundsensitivity Sent: Wed, November 16, 2011 9:22:38 PMSubject: RE: Re: Age and otc/medication question I feel bad that you went through such a horrible childhood. However, I don’t believe that this condition is a psychological response to traumatic events. My child has misophonia and had a very innocent and happy childhood. I think that you might have PTSD, and you also have misophonia, but they aren’t related. Just my feeling about it. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Sent: Wednesday, November 16, 2011 3:58 PMTo: Soundsensitivity Cc: Soundsensitivity Subject: Re: Re: Age and otc/medication question I have. I believe I have this from my childhood. When I was young I would hear my parents fighting. My dad would hit her. Being so little and probably sleeping in bed. I would just hear what was happening and didn't understand. But I would wait for the noises. I was diagnosed with PTSD. Lagrasta 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]

,

You are a very caring and intellent mother, obviously. I wish I had that growing up.

I liked the way you described how you deal with this problem, because it is exactly how I have learned to deal with it thus far:

To "orchestrate our lives to minimize this problem" .... That is the key for me at this point and always has been. Very well put.

Mike

To: Soundsensitivity Sent: Saturday, November 26, 2011 8:18 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