Re: New Here - and an explanation ...

[Guest guest]

Reasons I am grateful for this group and all related websites and compassionate Medical Professionals involved.

1. After over 50 years of suffering in silence, I can not feel so alone and bad about myself. There is support and hope for the future.

2. I do not have to be so embarrassed and ashamed of this condition.It is easier to explain to others about this so they are aware of it and can try to be considerate and understanding. I can print out easy to understand information about 4S and show it to them or just send it in an e-mail to all those that I associate with if I feel it necessary, including family.

3. It is empowering to have some control of your life and environment. There is strength in numbers.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse.

Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

Reasons I am grateful for this group and all related websites and compassionate Medical Professionals involved.

1. After over 50 years of suffering in silence, I can not feel so alone and bad about myself. There is support and hope for the future.

2. I do not have to be so embarrassed and ashamed of this condition.It is easier to explain to others about this so they are aware of it and can try to be considerate and understanding. I can print out easy to understand information about 4S and show it to them or just send it in an e-mail to all those that I associate with if I feel it necessary, including family.

3. It is empowering to have some control of your life and environment. There is strength in numbers.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse.

Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

http://www.time.com/time/magazine/article/0,9171,1950942,00.html?artId=1950942?contType=article?chn=us

This was an interesting article by Lev Grossman that appeared in Time magazine about a year ago. I saved it.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse.

Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

http://www.time.com/time/magazine/article/0,9171,1950942,00.html?artId=1950942?contType=article?chn=us

This was an interesting article by Lev Grossman that appeared in Time magazine about a year ago. I saved it.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse.

Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

http://www.time.com/time/magazine/article/0,9171,1950942,00.html?artId=1950942?contType=article?chn=us

This was an interesting article by Lev Grossman that appeared in Time magazine about a year ago. I saved it.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse.

Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

Thank you so much for asking me.

Hearing aids are good for hearing loss.

That is their main function, like a shoe fits best on your foot.

I use that hearing aid for people with tinnitus because it really does help them

with the disturbing sound inside their heads and they also of course need to

have hearing loss and of course this helps, again, with that as a primary goal.

Sometimes any hearing aid (about 42 percent) helps with tinnitus.

I have zero experience of knowledge of that unit for use with 4S.

I would not recommend it for hyperacusis, either.

Unless that person had hearing loss of course and then they could choose from a

wide variety of hearing aids.

Each audiologist can offer a hearing aid trial for up to 60 days and then you

can return the unit or units for a small fee, usually about $100 per aid. This

is legistlated in your state and you can check under Hearing Aids in your google

search for your state law.

I do not know if this unit will have a positive effect on you with the 4S.

Seems like most people with 4S have super hearing abilities and actually this is

one of the reasons why I think the condition improves over time as we naturally

lose hearing as we age.

The patients I have seen and tested tend to have near perfect hearing (as should

young people) and even better than average hearing (hear thru walls and doors

people...).

This compounds the problem.

BUT if you do have hearing loss and need a hearing aid, that is a good one. It

is also the Cadillac of hearing aids, and there are many modestly priced ones,

even from the same company, that offer the same Zen program in lower priced

units. I would also shop around a bit, times are hard, and people might

bargain, 10-20 percent off.

Be proactive and be sure to read the contract!

Then if you do try it, come back and tell us all how it affected or did not

affect your 4S issues.

Marsha , AuD

>

> Thanks for the explanation Dr J. 

> Your words are appreciated. 

> I have a question for you. 

> I have been recommended to use Widex clear 440 hearing aids with the Zen

program

> built in. 

>

> I'm struggling to pay $7,000 and not have any idea that it will help.  I'm

only

> aware of a 30 day return period, yet I understand it will take 9-18 months to

> see much benefit.  In your experience, is there any flexibility with the

return

> period if I get 6 months down the road and find no benefit? 

>

> Would you have any other input about this?

> Thanks

> J

>

>

>

>

> ________________________________

>

> To: Soundsensitivity

> Sent: Thu, February 3, 2011 11:14:54 PM

> Subject: Re: New Here - and an explanation ...

>

>  

>

> Thanks for the explanation and information.

>

> I would like to be very clear here in thie group that I do not believe 4S is

the

> best term for this affliction.

>

> Please remember I began to use this name at a time when the only other terms

> available were Tinnitus OR Hyperacusis.

>

> I had never heard of misophonia.

>

> My first patient with these symptoms was in 1997 or 1998 when a teen ager

drove

> down with her father from Vancouver, BC and I did not know what this was all

> about.

>

> No one else did either.

>

> When misophonia was presented as a term, it was explained to me as strong

> dislike (or hatred) of all sounds.

>

>

> And that made sense to me because I have indeed evaluated and treated patients

> over the past 13 years who really did show full blown misophonia, i.e., they

> lived in basements with earplugs and ear muffs or in thickly insulated camper

> pickups in an isolated mountain wilderness.

>

> So that term misophonia came along later and was not well defined nor was it

> really presented to the audiology community in any organized fashion.

>

> In addition, and the final straw for me, was the treatment that was presented

as

> the 'fix' for misophonia, which was to listen to pleasant sounds, over three

> week cycles, progressively louder in volume and then repeat.

>

> I had tried this with 4S patients and it was of little value. I had inherited

a

> large group of patients with these symptoms who had been through that protocol

> with another clinic or two, over time, who were not satisfied or even slightly

> improved.

>

> I agree with our new guest that sound generators do not shift these symptoms

> significantly over even long periods of time, but I also have over a decade of

> direct experience of patients who try them out and who report they are much

> better with them, and some have reported enormous improvement in life quality.

> Some of course, try them, and find they do not help at all, and return them.

>

> The field, as I have said before, is only at the first stage of working with

> general hyperacusis, even acknowledging it, and the much smaller subset of

> people with the symptoms described in this website, are still nearly

invisible.

>

> Audiologists, however, across the country, are reading about this problem and

in

> the past several years, there have been some significant forward movements,

> i.e., our public website, and my recent article on the audiology website,

which

> turned out to tbe their most visited and commented on article, ever! I am

sorry,

> the name slips my tired mind tonight.

>

> I hope this history is helpful to everyone. I am pondering how to respond to

the

> dozens of people who contact me every week who want more information and help

in

> this specific situation.

>

> I am preparing to collect a series of surveys in order to publish more

> information about this problem and I am grateful to everyone who completed the

> survey and pointed out the potential areas for correction or addition.

>

> Dr. J

>

[Guest guest]

Abovt 7 years ago or so I was giving a lecture to a group of V.A. hospital

audiologists and I had 5 minutes left over so I of course I used them for my

favorite subject, 4S.

As I started to describe it, an audiologist 3 seats over raised her hand, I have

that she said....

Never know.

> >

> > I was wondering why I didn't see you over there anymore. Dorks.

> >

> > As far as how common this is... I have no clue. I have never met anyone in

the general public who reacts to sound like I do. I have a friend who hates gum

popping, and dogs barking but she just gets annoyed. She can tone it out or

brush it off and still concentrate and function. Every doctor I have mentioned

this to says they've never heard of it before from anyone else. The only people

I have found who can somewhat relate are my mother, sister and niece. I say

they can 'somewhat' relate because we are at different degree's with me being

the worst.

>

[Guest guest]

Abovt 7 years ago or so I was giving a lecture to a group of V.A. hospital

audiologists and I had 5 minutes left over so I of course I used them for my

favorite subject, 4S.

As I started to describe it, an audiologist 3 seats over raised her hand, I have

that she said....

Never know.

> >

> > I was wondering why I didn't see you over there anymore. Dorks.

> >

> > As far as how common this is... I have no clue. I have never met anyone in

the general public who reacts to sound like I do. I have a friend who hates gum

popping, and dogs barking but she just gets annoyed. She can tone it out or

brush it off and still concentrate and function. Every doctor I have mentioned

this to says they've never heard of it before from anyone else. The only people

I have found who can somewhat relate are my mother, sister and niece. I say

they can 'somewhat' relate because we are at different degree's with me being

the worst.

>

[Guest guest]

Not sure that is true. It's a nice site and has been spidered already. The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor.

[Guest guest]

Not sure that is true. It's a nice site and has been spidered already. The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor.

[Guest guest]

Funny thing I typed it wrong here but the posts i put on the 2 boards had the right website! I already have 4 people commenting on my Facebook status and given what they are saying sounds like they have 4S and of course had no idea others with it existed!Sent from my iPhone

Hey Heidi, Not sure which one you meant but thought I might tweak that URL. The public website for this group is www.soundsensitivity.info The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor. At the end of 2009 a group of us attempted to build on that site but failed hence we created www.soundsensitivity.info . if I could buy the other one out and redirect it I would but I don’t think he will sell. anyway, thank you for your effort, help and support with the new site, and to everyone else as well. It really has made a tremendous difference. Night all From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Thursday, February 03, 2011 11:30 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Welcome. I don't much care that the board kicked me off for typing 4S. What I minded was the fact that they think this of us who feel we have this subsection of misophonia are just crazy and need therapy and meds. The dismissiveness is highly offensive. Anyway, my aun't has it and one if my co-workers has it, both of whom hide it, as did I until I found this group. So like others have said, finding out how widespread it is is difficult. Certainly having this group and the wonderful site has put together can provide the outreach so that we can eventually get a better idea on how widespread it really is. I am member of two other discussion groups. One for natural parenting in San Diego and the other for thyroid issues in CA. I'm going to post on both asking if anyone has these symptoms and invite them to join this discussion group and visit www.soundsensitivity.org. If every 1500 of us here did that in our web and day life, we could really create a snowball effect to getting the world out and maybe see just how extensive this is. HeidiSent from my iPhone Hello.I am the person Marsha was talking about in the "Sensitive Decision"thread. I'd like to explain why I have asked her if I may join thisboard and hopefully allay some of your concerns.I do not have 4S or any other kind of sound sensitivity, but I am veryinterested in learning about the issues facing people with 4S and howthey address those issues. At this early point in my understanding, Ido not believe that broadband sound will have any widespreadeffectiveness in 4S, but I do remain open-minded in that regard. Myreasons for wanting to be here lie more in the realm of the intellectualand compassionate. Also, I teach hearing healthcare professionals abouttinnitus and sound sensitivity. I gave a presentation to some 100 lastweek in Baton Rouge, and I'll be speaking to 150 Au.D. students andaudiologists in the Phoenix area later this month. The more I knowabout 4S, the better those presentations will be - and the more those inmy audiences will know about your condition!Just a few words about terminology. I personally do not prefer the term"4S" for reasons that I will explain - but at the same time I wasabsolutely furious with the owner of the H board for banning the termfrom being used there. I mean, how small-minded can one get??!! Therewas also a campaign to get the "4S" and "Selective Sound SensitivitySyndrome" pages removed from Wikipedia. I want you to know that I wasnot part of that campaign.The main problem in all this has to do with lack of uniformity andagreement in terminology. For instance, I see on the main page of thisboard that "misophonia" is defined as a general dislike of all sound. If that is the definition of misophonia, then absolutely withoutquestion 4S deserves a category of its own. Turns out, however, thatwhile some might view misophonia as a dislike of all sound, Dr.Jastreboff defines it as an aversive response to [some] sound due toactivation of the limbic and autonomic nervous systems. Well, thatdefinition fits 4S perfectly in terms of its being selective, involvingtriggers, involving emotion, and involving "fight or flight." So, sinceI happen to like the way Dr. Jastreboff defines things, I personally donot prefer a separate 4S categorization. But that's a personal feeling- not some sort of edict. Moreover, by prohibiting any reference to 4Son the H board, the owner there has effectively excluded input from avery important contingent of folks with sound sensitivity. To me thatis unacceptable.I'll say one other thing about terminology and then conclude with arequest. Turns out that there are very legitimate ways of looking atsound sensitivity that do not specifically refer to misophonia or to 4S.The University of Iowa is a highly regarded center. There they considerall sound sensitivity to be hyperacusis (which, incidentally, is totallyconsistent with the Greek origins of the word.) They then subdividetheir sound sensitivity patients into folks with "loudness hyperacusis,""fear hyperacusis," and "annoyance hyperacusis" - and they havedeveloped some very nice treatment protocols based upon into which groupor groups any given patient might fall. Well, guess what? Just as 4Sis considered to be illegitimate by the owner of the H board, so too isuse of the University of Iowa categorization frowned upon anddiscouraged. Makes you wonder, no?OK. With that said, I am here to learn - not to preach. 4S exists, nomatter what anybody wants to call it. And this board is the very bestplace that a person can come to learn about it. To those of you whoprefer that I not be here, I ask that you kindly withhold judgment - fora little while, anyway. And to the person who threatened to leave if Iwere allowed to participate, I understand how strongly you feel and askonly that you delay your decision a few weeks.Thanks much for listening.Best to all -stephen nagler

[Guest guest]

Thanks Dr J.

I do have hearing loss, yet also have ultra sensitivity as well.

diagnosed with chronic migraines, hyperacusis and tinnitus.

To: Soundsensitivity Sent: Fri, February 4, 2011 9:58:50 AMSubject: Re: New Here - and an explanation ...

Thank you so much for asking me.Hearing aids are good for hearing loss.That is their main function, like a shoe fits best on your foot.I use that hearing aid for people with tinnitus because it really does help them with the disturbing sound inside their heads and they also of course need to have hearing loss and of course this helps, again, with that as a primary goal.Sometimes any hearing aid (about 42 percent) helps with tinnitus.I have zero experience of knowledge of that unit for use with 4S.I would not recommend it for hyperacusis, either.Unless that person had hearing loss of course and then they could choose from a wide variety of hearing aids.Each audiologist can offer a hearing aid trial for up to 60 days and then you can return the unit or units for a small fee, usually about $100 per aid. This is legistlated in your state and you can check under Hearing Aids in your google

search for your state law.I do not know if this unit will have a positive effect on you with the 4S. Seems like most people with 4S have super hearing abilities and actually this is one of the reasons why I think the condition improves over time as we naturally lose hearing as we age.The patients I have seen and tested tend to have near perfect hearing (as should young people) and even better than average hearing (hear thru walls and doors people...).This compounds the problem.BUT if you do have hearing loss and need a hearing aid, that is a good one. It is also the Cadillac of hearing aids, and there are many modestly priced ones, even from the same company, that offer the same Zen program in lower priced units. I would also shop around a bit, times are hard, and people might bargain, 10-20 percent off.Be proactive and be sure to read the contract!Then if you do try it, come back and tell us all how it

affected or did not affect your 4S issues.Marsha , AuD>> Thanks for the explanation Dr J. > Your words are appreciated. > I have a question for you. > I have been recommended to use Widex clear 440 hearing aids with the Zen program > built in. > > I'm struggling to pay $7,000 and not have any idea that it will help. I'm only > aware of a 30 day return period, yet I understand it will take 9-18 months to > see much benefit. In your experience, is there any flexibility with the return > period if I get 6 months down the road and find no benefit? > > Would you have any

other input about this? > Thanks> J> > > > > ________________________________> > To: Soundsensitivity > Sent: Thu, February 3, 2011 11:14:54 PM> Subject: Re: New Here - and an explanation ...> > Â > > Thanks for the explanation and information.> > I would like to be very clear here in thie group that I do not believe 4S is the > best term for this affliction.> > Please remember I began to use this name at a time when the only other terms > available were Tinnitus OR Hyperacusis.> > I had never heard of misophonia. > > My first patient with these symptoms was in 1997 or 1998 when a

teen ager drove > down with her father from Vancouver, BC and I did not know what this was all > about.> > No one else did either.> > When misophonia was presented as a term, it was explained to me as strong > dislike (or hatred) of all sounds. > > > And that made sense to me because I have indeed evaluated and treated patients > over the past 13 years who really did show full blown misophonia, i.e., they > lived in basements with earplugs and ear muffs or in thickly insulated camper > pickups in an isolated mountain wilderness.> > So that term misophonia came along later and was not well defined nor was it > really presented to the audiology community in any organized fashion.> > In addition, and the final straw for me, was the treatment that was presented as > the 'fix' for misophonia, which was to listen to pleasant

sounds, over three > week cycles, progressively louder in volume and then repeat.> > I had tried this with 4S patients and it was of little value. I had inherited a > large group of patients with these symptoms who had been through that protocol > with another clinic or two, over time, who were not satisfied or even slightly > improved.> > I agree with our new guest that sound generators do not shift these symptoms > significantly over even long periods of time, but I also have over a decade of > direct experience of patients who try them out and who report they are much > better with them, and some have reported enormous improvement in life quality. > Some of course, try them, and find they do not help at all, and return them.> > The field, as I have said before, is only at the first stage of working with > general hyperacusis, even acknowledging

it, and the much smaller subset of > people with the symptoms described in this website, are still nearly invisible.> > Audiologists, however, across the country, are reading about this problem and in > the past several years, there have been some significant forward movements, > i.e., our public website, and my recent article on the audiology website, which > turned out to tbe their most visited and commented on article, ever! I am sorry, > the name slips my tired mind tonight.> > I hope this history is helpful to everyone. I am pondering how to respond to the > dozens of people who contact me every week who want more information and help in > this specific situation.> > I am preparing to collect a series of surveys in order to publish more > information about this problem and I am grateful to everyone who completed the > survey and pointed out the

potential areas for correction or addition.> > Dr. J>

[Guest guest]

Welcome, I am glad to have you here and look forward to your input. I agree with your post below regarding the H network and was not aware of the expanded definition of misophonia. I personally do not care for one name or another, I merely seek a way to control the reaction or remove it altogether. Thank you for taking the time to learn about what we are dealing with, for keeping an open mind and for wishing to help advocate where possible. It is greatly appreciated. Kind Regards McKenna From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 8:03 AMTo: Soundsensitivity Subject: New Here - and an explanation ... Hello.I am the person Marsha was talking about in the " Sensitive Decision " thread. I'd like to explain why I have asked her if I may join thisboard and hopefully allay some of your concerns.I do not have 4S or any other kind of sound sensitivity, but I am veryinterested in learning about the issues facing people with 4S and howthey address those issues. At this early point in my understanding, Ido not believe that broadband sound will have any widespreadeffectiveness in 4S, but I do remain open-minded in that regard. Myreasons for wanting to be here lie more in the realm of the intellectualand compassionate. Also, I teach hearing healthcare professionals abouttinnitus and sound sensitivity. I gave a presentation to some 100 lastweek in Baton Rouge, and I'll be speaking to 150 Au.D. students andaudiologists in the Phoenix area later this month. The more I knowabout 4S, the better those presentations will be - and the more those inmy audiences will know about your condition!Just a few words about terminology. I personally do not prefer the term " 4S " for reasons that I will explain - but at the same time I wasabsolutely furious with the owner of the H board for banning the termfrom being used there. I mean, how small-minded can one get??!! Therewas also a campaign to get the " 4S " and " Selective Sound SensitivitySyndrome " pages removed from Wikipedia. I want you to know that I wasnot part of that campaign.The main problem in all this has to do with lack of uniformity andagreement in terminology. For instance, I see on the main page of thisboard that " misophonia " is defined as a general dislike of all sound. If that is the definition of misophonia, then absolutely withoutquestion 4S deserves a category of its own. Turns out, however, thatwhile some might view misophonia as a dislike of all sound, Dr.Jastreboff defines it as an aversive response to [some] sound due toactivation of the limbic and autonomic nervous systems. Well, thatdefinition fits 4S perfectly in terms of its being selective, involvingtriggers, involving emotion, and involving " fight or flight. " So, sinceI happen to like the way Dr. Jastreboff defines things, I personally donot prefer a separate 4S categorization. But that's a personal feeling- not some sort of edict. Moreover, by prohibiting any reference to 4Son the H board, the owner there has effectively excluded input from avery important contingent of folks with sound sensitivity. To me thatis unacceptable.I'll say one other thing about terminology and then conclude with arequest. Turns out that there are very legitimate ways of looking atsound sensitivity that do not specifically refer to misophonia or to 4S.The University of Iowa is a highly regarded center. There they considerall sound sensitivity to be hyperacusis (which, incidentally, is totallyconsistent with the Greek origins of the word.) They then subdividetheir sound sensitivity patients into folks with " loudness hyperacusis, " " fear hyperacusis, " and " annoyance hyperacusis " - and they havedeveloped some very nice treatment protocols based upon into which groupor groups any given patient might fall. Well, guess what? Just as 4Sis considered to be illegitimate by the owner of the H board, so too isuse of the University of Iowa categorization frowned upon anddiscouraged. Makes you wonder, no?OK. With that said, I am here to learn - not to preach. 4S exists, nomatter what anybody wants to call it. And this board is the very bestplace that a person can come to learn about it. To those of you whoprefer that I not be here, I ask that you kindly withhold judgment - fora little while, anyway. And to the person who threatened to leave if Iwere allowed to participate, I understand how strongly you feel and askonly that you delay your decision a few weeks.Thanks much for listening.Best to all -stephen nagler

[Guest guest]

Welcome, I am glad to have you here and look forward to your input. I agree with your post below regarding the H network and was not aware of the expanded definition of misophonia. I personally do not care for one name or another, I merely seek a way to control the reaction or remove it altogether. Thank you for taking the time to learn about what we are dealing with, for keeping an open mind and for wishing to help advocate where possible. It is greatly appreciated. Kind Regards McKenna From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 8:03 AMTo: Soundsensitivity Subject: New Here - and an explanation ... Hello.I am the person Marsha was talking about in the " Sensitive Decision " thread. I'd like to explain why I have asked her if I may join thisboard and hopefully allay some of your concerns.I do not have 4S or any other kind of sound sensitivity, but I am veryinterested in learning about the issues facing people with 4S and howthey address those issues. At this early point in my understanding, Ido not believe that broadband sound will have any widespreadeffectiveness in 4S, but I do remain open-minded in that regard. Myreasons for wanting to be here lie more in the realm of the intellectualand compassionate. Also, I teach hearing healthcare professionals abouttinnitus and sound sensitivity. I gave a presentation to some 100 lastweek in Baton Rouge, and I'll be speaking to 150 Au.D. students andaudiologists in the Phoenix area later this month. The more I knowabout 4S, the better those presentations will be - and the more those inmy audiences will know about your condition!Just a few words about terminology. I personally do not prefer the term " 4S " for reasons that I will explain - but at the same time I wasabsolutely furious with the owner of the H board for banning the termfrom being used there. I mean, how small-minded can one get??!! Therewas also a campaign to get the " 4S " and " Selective Sound SensitivitySyndrome " pages removed from Wikipedia. I want you to know that I wasnot part of that campaign.The main problem in all this has to do with lack of uniformity andagreement in terminology. For instance, I see on the main page of thisboard that " misophonia " is defined as a general dislike of all sound. If that is the definition of misophonia, then absolutely withoutquestion 4S deserves a category of its own. Turns out, however, thatwhile some might view misophonia as a dislike of all sound, Dr.Jastreboff defines it as an aversive response to [some] sound due toactivation of the limbic and autonomic nervous systems. Well, thatdefinition fits 4S perfectly in terms of its being selective, involvingtriggers, involving emotion, and involving " fight or flight. " So, sinceI happen to like the way Dr. Jastreboff defines things, I personally donot prefer a separate 4S categorization. But that's a personal feeling- not some sort of edict. Moreover, by prohibiting any reference to 4Son the H board, the owner there has effectively excluded input from avery important contingent of folks with sound sensitivity. To me thatis unacceptable.I'll say one other thing about terminology and then conclude with arequest. Turns out that there are very legitimate ways of looking atsound sensitivity that do not specifically refer to misophonia or to 4S.The University of Iowa is a highly regarded center. There they considerall sound sensitivity to be hyperacusis (which, incidentally, is totallyconsistent with the Greek origins of the word.) They then subdividetheir sound sensitivity patients into folks with " loudness hyperacusis, " " fear hyperacusis, " and " annoyance hyperacusis " - and they havedeveloped some very nice treatment protocols based upon into which groupor groups any given patient might fall. Well, guess what? Just as 4Sis considered to be illegitimate by the owner of the H board, so too isuse of the University of Iowa categorization frowned upon anddiscouraged. Makes you wonder, no?OK. With that said, I am here to learn - not to preach. 4S exists, nomatter what anybody wants to call it. And this board is the very bestplace that a person can come to learn about it. To those of you whoprefer that I not be here, I ask that you kindly withhold judgment - fora little while, anyway. And to the person who threatened to leave if Iwere allowed to participate, I understand how strongly you feel and askonly that you delay your decision a few weeks.Thanks much for listening.Best to all -stephen nagler

[Guest guest]

It appears that 4s is far more common that first thought. I have met multiple people with this condition who just kept quiet for fear of being misunderstood, or not clearly understanding the problem themselves. I think once we start properly pushing forwards with public awareness we will see just how wide spread the condition is. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 1:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Hi Darlene -Thanks for the welcome.I don't know exactly who " the other one " is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was " real real bad " hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda " I have no clue what you are talking about " look. Then we get writtenoff as " crazy " and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

It appears that 4s is far more common that first thought. I have met multiple people with this condition who just kept quiet for fear of being misunderstood, or not clearly understanding the problem themselves. I think once we start properly pushing forwards with public awareness we will see just how wide spread the condition is. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 1:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Hi Darlene -Thanks for the welcome.I don't know exactly who " the other one " is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was " real real bad " hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda " I have no clue what you are talking about " look. Then we get writtenoff as " crazy " and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

Hey maikaefer,I was referring to his disappearance for months when we were all working on the site together, I'm not degrading the quality or work that went into it as getting to number 1 in google is not a simple task. If I am wrong and he is active ill gladly retract that comment Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Fri, 4 Feb 2011 08:50:07 -0800 (PST)To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Not sure that is true. It's a nice site and has been spidered already. The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor.

[Guest guest]

Hey maikaefer,I was referring to his disappearance for months when we were all working on the site together, I'm not degrading the quality or work that went into it as getting to number 1 in google is not a simple task. If I am wrong and he is active ill gladly retract that comment Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Fri, 4 Feb 2011 08:50:07 -0800 (PST)To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Not sure that is true. It's a nice site and has been spidered already. The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor.

[Guest guest]

Hey maikaefer,I was referring to his disappearance for months when we were all working on the site together, I'm not degrading the quality or work that went into it as getting to number 1 in google is not a simple task. If I am wrong and he is active ill gladly retract that comment Sent from my BlackBerry® smartphone on 3Sender: Soundsensitivity Date: Fri, 4 Feb 2011 08:50:07 -0800 (PST)To: <Soundsensitivity >ReplyTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Not sure that is true. It's a nice site and has been spidered already. The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor.

[Guest guest]

Hey Heidi, Not sure which one you meant but thought I might tweak that URL. The public website for this group is www.soundsensitivity.info The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor. At the end of 2009 a group of us attempted to build on that site but failed hence we created www.soundsensitivity.info . if I could buy the other one out and redirect it I would but I don’t think he will sell. anyway, thank you for your effort, help and support with the new site, and to everyone else as well. It really has made a tremendous difference. Night all From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Thursday, February 03, 2011 11:30 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Welcome. I don't much care that the board kicked me off for typing 4S. What I minded was the fact that they think this of us who feel we have this subsection of misophonia are just crazy and need therapy and meds. The dismissiveness is highly offensive. Anyway, my aun't has it and one if my co-workers has it, both of whom hide it, as did I until I found this group. So like others have said, finding out how widespread it is is difficult. Certainly having this group and the wonderful site has put together can provide the outreach so that we can eventually get a better idea on how widespread it really is. I am member of two other discussion groups. One for natural parenting in San Diego and the other for thyroid issues in CA. I'm going to post on both asking if anyone has these symptoms and invite them to join this discussion group and visit www.soundsensitivity.org. If every 1500 of us here did that in our web and day life, we could really create a snowball effect to getting the world out and maybe see just how extensive this is. HeidiSent from my iPhone Hello.I am the person Marsha was talking about in the " Sensitive Decision " thread. I'd like to explain why I have asked her if I may join thisboard and hopefully allay some of your concerns.I do not have 4S or any other kind of sound sensitivity, but I am veryinterested in learning about the issues facing people with 4S and howthey address those issues. At this early point in my understanding, Ido not believe that broadband sound will have any widespreadeffectiveness in 4S, but I do remain open-minded in that regard. Myreasons for wanting to be here lie more in the realm of the intellectualand compassionate. Also, I teach hearing healthcare professionals abouttinnitus and sound sensitivity. I gave a presentation to some 100 lastweek in Baton Rouge, and I'll be speaking to 150 Au.D. students andaudiologists in the Phoenix area later this month. The more I knowabout 4S, the better those presentations will be - and the more those inmy audiences will know about your condition!Just a few words about terminology. I personally do not prefer the term " 4S " for reasons that I will explain - but at the same time I wasabsolutely furious with the owner of the H board for banning the termfrom being used there. I mean, how small-minded can one get??!! Therewas also a campaign to get the " 4S " and " Selective Sound SensitivitySyndrome " pages removed from Wikipedia. I want you to know that I wasnot part of that campaign.The main problem in all this has to do with lack of uniformity andagreement in terminology. For instance, I see on the main page of thisboard that " misophonia " is defined as a general dislike of all sound. If that is the definition of misophonia, then absolutely withoutquestion 4S deserves a category of its own. Turns out, however, thatwhile some might view misophonia as a dislike of all sound, Dr.Jastreboff defines it as an aversive response to [some] sound due toactivation of the limbic and autonomic nervous systems. Well, thatdefinition fits 4S perfectly in terms of its being selective, involvingtriggers, involving emotion, and involving " fight or flight. " So, sinceI happen to like the way Dr. Jastreboff defines things, I personally donot prefer a separate 4S categorization. But that's a personal feeling- not some sort of edict. Moreover, by prohibiting any reference to 4Son the H board, the owner there has effectively excluded input from avery important contingent of folks with sound sensitivity. To me thatis unacceptable.I'll say one other thing about terminology and then conclude with arequest. Turns out that there are very legitimate ways of looking atsound sensitivity that do not specifically refer to misophonia or to 4S.The University of Iowa is a highly regarded center. There they considerall sound sensitivity to be hyperacusis (which, incidentally, is totallyconsistent with the Greek origins of the word.) They then subdividetheir sound sensitivity patients into folks with " loudness hyperacusis, " " fear hyperacusis, " and " annoyance hyperacusis " - and they havedeveloped some very nice treatment protocols based upon into which groupor groups any given patient might fall. Well, guess what? Just as 4Sis considered to be illegitimate by the owner of the H board, so too isuse of the University of Iowa categorization frowned upon anddiscouraged. Makes you wonder, no?OK. With that said, I am here to learn - not to preach. 4S exists, nomatter what anybody wants to call it. And this board is the very bestplace that a person can come to learn about it. To those of you whoprefer that I not be here, I ask that you kindly withhold judgment - fora little while, anyway. And to the person who threatened to leave if Iwere allowed to participate, I understand how strongly you feel and askonly that you delay your decision a few weeks.Thanks much for listening.Best to all -stephen nagler

[Guest guest]

Hey Heidi, Not sure which one you meant but thought I might tweak that URL. The public website for this group is www.soundsensitivity.info The other website www.soundsensitive.org was created many years ago by an admin that no longer seems to want to have anything to do with it, there is still some activity there though but minor. At the end of 2009 a group of us attempted to build on that site but failed hence we created www.soundsensitivity.info . if I could buy the other one out and redirect it I would but I don’t think he will sell. anyway, thank you for your effort, help and support with the new site, and to everyone else as well. It really has made a tremendous difference. Night all From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Heidi SalernoSent: Thursday, February 03, 2011 11:30 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ... Welcome. I don't much care that the board kicked me off for typing 4S. What I minded was the fact that they think this of us who feel we have this subsection of misophonia are just crazy and need therapy and meds. The dismissiveness is highly offensive. Anyway, my aun't has it and one if my co-workers has it, both of whom hide it, as did I until I found this group. So like others have said, finding out how widespread it is is difficult. Certainly having this group and the wonderful site has put together can provide the outreach so that we can eventually get a better idea on how widespread it really is. I am member of two other discussion groups. One for natural parenting in San Diego and the other for thyroid issues in CA. I'm going to post on both asking if anyone has these symptoms and invite them to join this discussion group and visit www.soundsensitivity.org. If every 1500 of us here did that in our web and day life, we could really create a snowball effect to getting the world out and maybe see just how extensive this is. HeidiSent from my iPhone Hello.I am the person Marsha was talking about in the " Sensitive Decision " thread. I'd like to explain why I have asked her if I may join thisboard and hopefully allay some of your concerns.I do not have 4S or any other kind of sound sensitivity, but I am veryinterested in learning about the issues facing people with 4S and howthey address those issues. At this early point in my understanding, Ido not believe that broadband sound will have any widespreadeffectiveness in 4S, but I do remain open-minded in that regard. Myreasons for wanting to be here lie more in the realm of the intellectualand compassionate. Also, I teach hearing healthcare professionals abouttinnitus and sound sensitivity. I gave a presentation to some 100 lastweek in Baton Rouge, and I'll be speaking to 150 Au.D. students andaudiologists in the Phoenix area later this month. The more I knowabout 4S, the better those presentations will be - and the more those inmy audiences will know about your condition!Just a few words about terminology. I personally do not prefer the term " 4S " for reasons that I will explain - but at the same time I wasabsolutely furious with the owner of the H board for banning the termfrom being used there. I mean, how small-minded can one get??!! Therewas also a campaign to get the " 4S " and " Selective Sound SensitivitySyndrome " pages removed from Wikipedia. I want you to know that I wasnot part of that campaign.The main problem in all this has to do with lack of uniformity andagreement in terminology. For instance, I see on the main page of thisboard that " misophonia " is defined as a general dislike of all sound. If that is the definition of misophonia, then absolutely withoutquestion 4S deserves a category of its own. Turns out, however, thatwhile some might view misophonia as a dislike of all sound, Dr.Jastreboff defines it as an aversive response to [some] sound due toactivation of the limbic and autonomic nervous systems. Well, thatdefinition fits 4S perfectly in terms of its being selective, involvingtriggers, involving emotion, and involving " fight or flight. " So, sinceI happen to like the way Dr. Jastreboff defines things, I personally donot prefer a separate 4S categorization. But that's a personal feeling- not some sort of edict. Moreover, by prohibiting any reference to 4Son the H board, the owner there has effectively excluded input from avery important contingent of folks with sound sensitivity. To me thatis unacceptable.I'll say one other thing about terminology and then conclude with arequest. Turns out that there are very legitimate ways of looking atsound sensitivity that do not specifically refer to misophonia or to 4S.The University of Iowa is a highly regarded center. There they considerall sound sensitivity to be hyperacusis (which, incidentally, is totallyconsistent with the Greek origins of the word.) They then subdividetheir sound sensitivity patients into folks with " loudness hyperacusis, " " fear hyperacusis, " and " annoyance hyperacusis " - and they havedeveloped some very nice treatment protocols based upon into which groupor groups any given patient might fall. Well, guess what? Just as 4Sis considered to be illegitimate by the owner of the H board, so too isuse of the University of Iowa categorization frowned upon anddiscouraged. Makes you wonder, no?OK. With that said, I am here to learn - not to preach. 4S exists, nomatter what anybody wants to call it. And this board is the very bestplace that a person can come to learn about it. To those of you whoprefer that I not be here, I ask that you kindly withhold judgment - fora little while, anyway. And to the person who threatened to leave if Iwere allowed to participate, I understand how strongly you feel and askonly that you delay your decision a few weeks.Thanks much for listening.Best to all -stephen nagler

[Guest guest]

Trained interviewers if you want to do the job properly.

Problem with questionnaires is the low response rate. Probably biased. You need

to query the people who don't have 4S as well as the people who do. The people

who don't have it are less likely to respond to a questionnaire because it

doesn't interest them.

I have to say that I don't conduct these sorts of surveys myself; I have only

learned about them in psychology courses and statistics textbooks and reading

about the odd medical case study. You do want someone with the appropriate

research skills - a postgraduate student in psychology would do, as they could

get help from their supervisor.

It might be achievable if there is someone wanting to do a university project on

the incidence of 4S among students of a typical high school. Arranging with a

school to get permission to interview all the students could be difficult though

- you would need parental permission if they are under age. And the school

itself has to see the point of the exercise, I suppose. It helps if you are an

official government body such as the National Institutes of Health in the US.

>

>

>

> Subject: Re: New Here - and an explanation ...

> To: Soundsensitivity

> Date: Friday, February 4, 2011, 3:58 AM

>

>

>  

>

>

>

> You do not need to survey a large portion of the population.

>

> You could survey a representative sample of schools.

>

[Guest guest]

Thank you Ian for that explanation. I guess it may not be all that easy to do, but possible. I am not not associated with an academic setting so it would be difficult. If any out there is, I think it would be a worthy project.

ML

Subject: Re: New Here - and an explanation ...To: Soundsensitivity Date: Saturday, February 5, 2011, 5:01 AM

Trained interviewers if you want to do the job properly.Problem with questionnaires is the low response rate. Probably biased. You need to query the people who don't have 4S as well as the people who do. The people who don't have it are less likely to respond to a questionnaire because it doesn't interest them.I have to say that I don't conduct these sorts of surveys myself; I have only learned about them in psychology courses and statistics textbooks and reading about the odd medical case study. You do want someone with the appropriate research skills - a postgraduate student in psychology would do, as they could get help from their supervisor.It might be achievable if there is someone wanting to do a university project on the incidence of 4S among students of a typical high school. Arranging with a school to get permission to interview all the students could be difficult though - you would need parental permission if they

are under age. And the school itself has to see the point of the exercise, I suppose. It helps if you are an official government body such as the National Institutes of Health in the US.> > > > Subject: Re: New Here - and an explanation ...> To: Soundsensitivity > Date: Friday, February 4, 2011, 3:58 AM> > > Â > > > > You do not need to survey a large portion of the population.> > You could survey a representative sample of schools.>

[Guest guest]

Hi ,I read the articles posted at the link you provided. You do realize this this is the primary tact that Scientology uses during the auditing sessions only on a much larger scale?Sent from my iPad

http://www.time.com/time/magazine/article/0,9171,1950942,00.html?artId=1950942?contType=article?chn=us

This was an interesting article by Lev Grossman that appeared in Time magazine about a year ago. I saved it.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse. Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene

[Guest guest]

Hi ,I read the articles posted at the link you provided. You do realize this this is the primary tact that Scientology uses during the auditing sessions only on a much larger scale?Sent from my iPad

http://www.time.com/time/magazine/article/0,9171,1950942,00.html?artId=1950942?contType=article?chn=us

This was an interesting article by Lev Grossman that appeared in Time magazine about a year ago. I saved it.

ML

Subject: RE: Re: New Here - and an explanation ...To: Soundsensitivity Date: Thursday, February 3, 2011, 8:14 PM

I personally have met many people who have 4s/misophonia. Probably because I talk about it openly. However, our family must be a magnet for those who have it—or we just recognize it in others—because we meet people all the time who have it. My daughter’s dance teacher, another girl in her dance class, my neighbor, a boy that we carpooled with, a girl that my daughter met in class, another girl that my other daughter met in class, it goes on and on.

These people don’t just say “Oh yeah I get bothered too.†They look at me like they can’t believe I understand their condition (some look like they are going to cry with relief) and then they tell me what bothers them—and it sounds exactly like everyone else in this group. All the usual triggers and onset.

One day I was floored when an acquaintance of mine and I were talking at a school event and she told me that her daughter was really having problems with eating sounds. She didn’t know about my daughter’s problems. She told me that gum chewing seemed to be the worst trigger for her daughter. I told her about the group, but I don’t think she fully understood the severity of the situation. Then I saw her a couple of years later with her daughter, and they started asking me a lot of question about it, telling me that her daughter is still just as bad if not worse. Then there was the time I was at my high school reunion talking to a good friend who I knew very well, and I told her about my daughter’s horrible condition and she told me it sounded like her—she said that she tried to stab her brother with a fork once when it got so bad. I couldn’t believe that she had it (I hung out with her and never noticed her having any problems)---it goes to show you how 4sers hide and suffer in silence—they are afraid to let anyone know. Plus, now her son has it and he has it pretty bad! (Genetics link?) Then, my oldest daughter (who doesn’t have 4s) was having a girl from school come home with her and we knew she had 4s. However, my daughter was chewing gum and her friend said “um could you spit that out†and my daughter said “Oh I forgot—I’m so sorry!†And the boy who I drove home with us every day asked what they were talking about and I told him it was a sound sensitivity. He went on to sadly tell me he had the same problem and then told me how he has to hide in his room every night while his family eats because it’s so bad. He also said he can’t take silverware on plates clinking. He was a classic 4ser! Also, my daughter was going to take gymnastics classes and I was signing her up. I asked if gum chewing wasn’t allowed and the lady said that it wasn’t. Then I told her why I asked and about 4s. She looked at me in disbelief and proceeded to tell me that her ex-husband was so angry if anyone was eating. He couldn’t stand anyone eating chips or apples, etc. She told me that he was so bad that that’s one major reason they got divorced. Then she looked sad and told me she was going to have to tell their children about it because they couldn’t understand why he was always so angry. I could keep going on, but I think that this makes it obvious that 4s is much more wide spread than anyone realizes. It’s just that they hide it because they either feel like a freak, are afraid that people will use it against them, and/or think that they are just crazy.

We need research!

Kathy Howe

From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 4:59 PMTo: Soundsensitivity Subject: Re: New Here - and an explanation ...

Hi Darlene -Thanks for the welcome.I don't know exactly who "the other one" is to whom you refer below. Ifigure one of me is quite enough, no? :-)In terms of getting the medical community to become more aware of 4S,Darlene, I suspect that will be a very slow process indeed. I thinkthat the H Network is best positioned to advocate for awareness of allforms of sound sensitivity, but just about every time in the past Isuggested an advocacy effort to the owner of that board ... I got bannedas a reward for my efforts. In fact, to be honest with you I amcurrently banned from there for having the unmitigated gall to suggestto somebody who insisted that all he had was "real real bad" hyperacusisthat maybe something else might be going on in addition to hishyperacusis ... or he might have been getting better a bit quicker. (Yea, banned for respectfully offering an opinion that differs from

theowner's. Does that sound at all familiar?) So I really don't think theH Network is going to be a good advocate for 4S awareness, even thoughby numbers and history they are well positioned to do so. Then there'sATA. Marsha's on the Board of Directors there, but it seems that ATA istoo focused on its own mission to be very helpful in awareness advocacyfor tinnitus-related conditions like yours. That's not a criticism -just an observation.So it looks like if there is going to be any sort of 4S awarenessadvocacy, you are pretty-much on your own. Does anybody here have dataon just how common (or uncommon) 4S is in the general population?smn>> Dr. Nagler, Welcome to the hood. I

had my suspicions as to whowas coming, and you were one of them. I'm glad it was you... and notthe other one. Ha ha! Thank you for your introduction, I think it willhelp a lot of people be less concerned. I also thank you for explainingthat you disagreed with what went down on the H Network concerning theuse of the term '4S'. The whole situation was sad, and drove almosteveryone away. I remained simply to try and help newbies who join therethat have our condition.>> It would be nice, if once and for all, the medical community couldbecome more aware of this condition, and put it into the books with adefinitive name that everyone would recognize whatever that name be. Ithink awareness is key with us, because so many of us have tried to seekhelp with a doctor only to receive scrunched up foreheads, big eyes, anda "I have no clue what you are talking about" look. Then we get writtenoff as

"crazy" and given all sorts of drugs because certainly it must beOCD or we are just too high strung, etc... The fact remains thatdoctors just don't know that this is REAL.>> I believe you being here is a good thing. You have a strongconnection to the field and can be a voice where we cannot be. Thankyou for that.>> Darlene