Re: New Here - and an explanation ...

[Guest guest]

Dr. Nagler, Welcome to the hood. I had my suspicions as to who was coming,

and you were one of them. I'm glad it was you... and not the other one. Ha ha!

Thank you for your introduction, I think it will help a lot of people be less

concerned. I also thank you for explaining that you disagreed with what went

down on the H Network concerning the use of the term '4S'. The whole situation

was sad, and drove almost everyone away. I remained simply to try and help

newbies who join there that have our condition.

It would be nice, if once and for all, the medical community could become more

aware of this condition, and put it into the books with a definitive name that

everyone would recognize whatever that name be. I think awareness is key with

us, because so many of us have tried to seek help with a doctor only to receive

scrunched up foreheads, big eyes, and a " I have no clue what you are talking

about " look. Then we get written off as " crazy " and given all sorts of drugs

because certainly it must be OCD or we are just too high strung, etc... The

fact remains that doctors just don't know that this is REAL.

I believe you being here is a good thing. You have a strong connection to the

field and can be a voice where we cannot be. Thank you for that.

Darlene

>

> 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 this

> board and hopefully allay some of your concerns.

>

> I do not have 4S or any other kind of sound sensitivity, but I am very

> interested in learning about the issues facing people with 4S and how

> they address those issues. At this early point in my understanding, I

> do not believe that broadband sound will have any widespread

> effectiveness in 4S, but I do remain open-minded in that regard. My

> reasons for wanting to be here lie more in the realm of the intellectual

> and compassionate. Also, I teach hearing healthcare professionals about

> tinnitus and sound sensitivity. I gave a presentation to some 100 last

> week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

> audiologists in the Phoenix area later this month. The more I know

> about 4S, the better those presentations will be - and the more those in

> my 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 was

> absolutely furious with the owner of the H board for banning the term

> from being used there. I mean, how small-minded can one get??!! There

> was also a campaign to get the " 4S " and " Selective Sound Sensitivity

> Syndrome " pages removed from Wikipedia. I want you to know that I was

> not part of that campaign.

>

> The main problem in all this has to do with lack of uniformity and

> agreement in terminology. For instance, I see on the main page of this

> board that " misophonia " is defined as a general dislike of all sound.

> If that is the definition of misophonia, then absolutely without

> question 4S deserves a category of its own. Turns out, however, that

> while some might view misophonia as a dislike of all sound, Dr.

> Jastreboff defines it as an aversive response to [some] sound due to

> activation of the limbic and autonomic nervous systems. Well, that

> definition fits 4S perfectly in terms of its being selective, involving

> triggers, involving emotion, and involving " fight or flight. " So, since

> I happen to like the way Dr. Jastreboff defines things, I personally do

> not prefer a separate 4S categorization. But that's a personal feeling

> - not some sort of edict. Moreover, by prohibiting any reference to 4S

> on the H board, the owner there has effectively excluded input from a

> very important contingent of folks with sound sensitivity. To me that

> is unacceptable.

>

> I'll say one other thing about terminology and then conclude with a

> request. Turns out that there are very legitimate ways of looking at

> sound sensitivity that do not specifically refer to misophonia or to 4S.

> The University of Iowa is a highly regarded center. There they consider

> all sound sensitivity to be hyperacusis (which, incidentally, is totally

> consistent with the Greek origins of the word.) They then subdivide

> their sound sensitivity patients into folks with " loudness hyperacusis, "

> " fear hyperacusis, " and " annoyance hyperacusis " - and they have

> developed some very nice treatment protocols based upon into which group

> or groups any given patient might fall. Well, guess what? Just as 4S

> is considered to be illegitimate by the owner of the H board, so too is

> use of the University of Iowa categorization frowned upon and

> discouraged. Makes you wonder, no?

>

> OK. With that said, I am here to learn - not to preach. 4S exists, no

> matter what anybody wants to call it. And this board is the very best

> place that a person can come to learn about it. To those of you who

> prefer that I not be here, I ask that you kindly withhold judgment - for

> a little while, anyway. And to the person who threatened to leave if I

> were allowed to participate, I understand how strongly you feel and ask

> only that you delay your decision a few weeks.

>

> Thanks much for listening.

>

> Best to all -

>

> stephen nagler

>

[Guest guest]

Dr. Nagler, Welcome to the hood. I had my suspicions as to who was coming,

and you were one of them. I'm glad it was you... and not the other one. Ha ha!

Thank you for your introduction, I think it will help a lot of people be less

concerned. I also thank you for explaining that you disagreed with what went

down on the H Network concerning the use of the term '4S'. The whole situation

was sad, and drove almost everyone away. I remained simply to try and help

newbies who join there that have our condition.

It would be nice, if once and for all, the medical community could become more

aware of this condition, and put it into the books with a definitive name that

everyone would recognize whatever that name be. I think awareness is key with

us, because so many of us have tried to seek help with a doctor only to receive

scrunched up foreheads, big eyes, and a " I have no clue what you are talking

about " look. Then we get written off as " crazy " and given all sorts of drugs

because certainly it must be OCD or we are just too high strung, etc... The

fact remains that doctors just don't know that this is REAL.

I believe you being here is a good thing. You have a strong connection to the

field and can be a voice where we cannot be. Thank you for that.

Darlene

>

> 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 this

> board and hopefully allay some of your concerns.

>

> I do not have 4S or any other kind of sound sensitivity, but I am very

> interested in learning about the issues facing people with 4S and how

> they address those issues. At this early point in my understanding, I

> do not believe that broadband sound will have any widespread

> effectiveness in 4S, but I do remain open-minded in that regard. My

> reasons for wanting to be here lie more in the realm of the intellectual

> and compassionate. Also, I teach hearing healthcare professionals about

> tinnitus and sound sensitivity. I gave a presentation to some 100 last

> week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

> audiologists in the Phoenix area later this month. The more I know

> about 4S, the better those presentations will be - and the more those in

> my 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 was

> absolutely furious with the owner of the H board for banning the term

> from being used there. I mean, how small-minded can one get??!! There

> was also a campaign to get the " 4S " and " Selective Sound Sensitivity

> Syndrome " pages removed from Wikipedia. I want you to know that I was

> not part of that campaign.

>

> The main problem in all this has to do with lack of uniformity and

> agreement in terminology. For instance, I see on the main page of this

> board that " misophonia " is defined as a general dislike of all sound.

> If that is the definition of misophonia, then absolutely without

> question 4S deserves a category of its own. Turns out, however, that

> while some might view misophonia as a dislike of all sound, Dr.

> Jastreboff defines it as an aversive response to [some] sound due to

> activation of the limbic and autonomic nervous systems. Well, that

> definition fits 4S perfectly in terms of its being selective, involving

> triggers, involving emotion, and involving " fight or flight. " So, since

> I happen to like the way Dr. Jastreboff defines things, I personally do

> not prefer a separate 4S categorization. But that's a personal feeling

> - not some sort of edict. Moreover, by prohibiting any reference to 4S

> on the H board, the owner there has effectively excluded input from a

> very important contingent of folks with sound sensitivity. To me that

> is unacceptable.

>

> I'll say one other thing about terminology and then conclude with a

> request. Turns out that there are very legitimate ways of looking at

> sound sensitivity that do not specifically refer to misophonia or to 4S.

> The University of Iowa is a highly regarded center. There they consider

> all sound sensitivity to be hyperacusis (which, incidentally, is totally

> consistent with the Greek origins of the word.) They then subdivide

> their sound sensitivity patients into folks with " loudness hyperacusis, "

> " fear hyperacusis, " and " annoyance hyperacusis " - and they have

> developed some very nice treatment protocols based upon into which group

> or groups any given patient might fall. Well, guess what? Just as 4S

> is considered to be illegitimate by the owner of the H board, so too is

> use of the University of Iowa categorization frowned upon and

> discouraged. Makes you wonder, no?

>

> OK. With that said, I am here to learn - not to preach. 4S exists, no

> matter what anybody wants to call it. And this board is the very best

> place that a person can come to learn about it. To those of you who

> prefer that I not be here, I ask that you kindly withhold judgment - for

> a little while, anyway. And to the person who threatened to leave if I

> were allowed to participate, I understand how strongly you feel and ask

> only that you delay your decision a few weeks.

>

> Thanks much for listening.

>

> Best to all -

>

> stephen nagler

>

[Guest guest]

Hi Darlene -

Thanks for the welcome.

I don't know exactly who " the other one " is to whom you refer below. I

figure 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 think

that the H Network is best positioned to advocate for awareness of all

forms of sound sensitivity, but just about every time in the past I

suggested an advocacy effort to the owner of that board ... I got banned

as a reward for my efforts. In fact, to be honest with you I am

currently banned from there for having the unmitigated gall to suggest

to somebody who insisted that all he had was " real real bad " hyperacusis

that maybe something else might be going on in addition to his

hyperacusis ... or he might have been getting better a bit quicker.

(Yea, banned for respectfully offering an opinion that differs from the

owner's. Does that sound at all familiar?) So I really don't think the

H Network is going to be a good advocate for 4S awareness, even though

by numbers and history they are well positioned to do so. Then there's

ATA. Marsha's on the Board of Directors there, but it seems that ATA is

too focused on its own mission to be very helpful in awareness advocacy

for 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 awareness

advocacy, you are pretty-much on your own. Does anybody here have data

on just how common (or uncommon) 4S is in the general population?

smn

>

> Dr. Nagler, Welcome to the hood. I had my suspicions as to who

was coming, and you were one of them. I'm glad it was you... and not

the other one. Ha ha! Thank you for your introduction, I think it will

help a lot of people be less concerned. I also thank you for explaining

that you disagreed with what went down on the H Network concerning the

use of the term '4S'. The whole situation was sad, and drove almost

everyone away. I remained simply to try and help newbies who join there

that have our condition.

>

> It would be nice, if once and for all, the medical community could

become more aware of this condition, and put it into the books with a

definitive name that everyone would recognize whatever that name be. I

think awareness is key with us, because so many of us have tried to seek

help with a doctor only to receive scrunched up foreheads, big eyes, and

a " I have no clue what you are talking about " look. Then we get written

off as " crazy " and given all sorts of drugs because certainly it must be

OCD or we are just too high strung, etc... The fact remains that

doctors just don't know that this is REAL.

>

> I believe you being here is a good thing. You have a strong

connection to the field and can be a voice where we cannot be. Thank

you for that.

>

> Darlene

[Guest guest]

Hi Darlene -

Thanks for the welcome.

I don't know exactly who " the other one " is to whom you refer below. I

figure 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 think

that the H Network is best positioned to advocate for awareness of all

forms of sound sensitivity, but just about every time in the past I

suggested an advocacy effort to the owner of that board ... I got banned

as a reward for my efforts. In fact, to be honest with you I am

currently banned from there for having the unmitigated gall to suggest

to somebody who insisted that all he had was " real real bad " hyperacusis

that maybe something else might be going on in addition to his

hyperacusis ... or he might have been getting better a bit quicker.

(Yea, banned for respectfully offering an opinion that differs from the

owner's. Does that sound at all familiar?) So I really don't think the

H Network is going to be a good advocate for 4S awareness, even though

by numbers and history they are well positioned to do so. Then there's

ATA. Marsha's on the Board of Directors there, but it seems that ATA is

too focused on its own mission to be very helpful in awareness advocacy

for 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 awareness

advocacy, you are pretty-much on your own. Does anybody here have data

on just how common (or uncommon) 4S is in the general population?

smn

>

> Dr. Nagler, Welcome to the hood. I had my suspicions as to who

was coming, and you were one of them. I'm glad it was you... and not

the other one. Ha ha! Thank you for your introduction, I think it will

help a lot of people be less concerned. I also thank you for explaining

that you disagreed with what went down on the H Network concerning the

use of the term '4S'. The whole situation was sad, and drove almost

everyone away. I remained simply to try and help newbies who join there

that have our condition.

>

> It would be nice, if once and for all, the medical community could

become more aware of this condition, and put it into the books with a

definitive name that everyone would recognize whatever that name be. I

think awareness is key with us, because so many of us have tried to seek

help with a doctor only to receive scrunched up foreheads, big eyes, and

a " I have no clue what you are talking about " look. Then we get written

off as " crazy " and given all sorts of drugs because certainly it must be

OCD or we are just too high strung, etc... The fact remains that

doctors just don't know that this is REAL.

>

> I believe you being here is a good thing. You have a strong

connection to the field and can be a voice where we cannot be. Thank

you for that.

>

> Darlene

[Guest guest]

Welcome!

Thank you for your interest in our condition. Believe me when I say that even

one person who shows a willingness to take us seriously makes a huge difference.

I hope you find all of the information you are looking for, although I'm afraid

we don't have much information about 4S ourselves. (This is truly the unexplored

frontier!)

Best wishes,

-Kate K.

>

> 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 this

> board and hopefully allay some of your concerns.

>

> I do not have 4S or any other kind of sound sensitivity, but I am very

> interested in learning about the issues facing people with 4S and how

> they address those issues. At this early point in my understanding, I

> do not believe that broadband sound will have any widespread

> effectiveness in 4S, but I do remain open-minded in that regard. My

> reasons for wanting to be here lie more in the realm of the intellectual

> and compassionate. Also, I teach hearing healthcare professionals about

> tinnitus and sound sensitivity. I gave a presentation to some 100 last

> week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

> audiologists in the Phoenix area later this month. The more I know

> about 4S, the better those presentations will be - and the more those in

> my 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 was

> absolutely furious with the owner of the H board for banning the term

> from being used there. I mean, how small-minded can one get??!! There

> was also a campaign to get the " 4S " and " Selective Sound Sensitivity

> Syndrome " pages removed from Wikipedia. I want you to know that I was

> not part of that campaign.

>

> The main problem in all this has to do with lack of uniformity and

> agreement in terminology. For instance, I see on the main page of this

> board that " misophonia " is defined as a general dislike of all sound.

> If that is the definition of misophonia, then absolutely without

> question 4S deserves a category of its own. Turns out, however, that

> while some might view misophonia as a dislike of all sound, Dr.

> Jastreboff defines it as an aversive response to [some] sound due to

> activation of the limbic and autonomic nervous systems. Well, that

> definition fits 4S perfectly in terms of its being selective, involving

> triggers, involving emotion, and involving " fight or flight. " So, since

> I happen to like the way Dr. Jastreboff defines things, I personally do

> not prefer a separate 4S categorization. But that's a personal feeling

> - not some sort of edict. Moreover, by prohibiting any reference to 4S

> on the H board, the owner there has effectively excluded input from a

> very important contingent of folks with sound sensitivity. To me that

> is unacceptable.

>

> I'll say one other thing about terminology and then conclude with a

> request. Turns out that there are very legitimate ways of looking at

> sound sensitivity that do not specifically refer to misophonia or to 4S.

> The University of Iowa is a highly regarded center. There they consider

> all sound sensitivity to be hyperacusis (which, incidentally, is totally

> consistent with the Greek origins of the word.) They then subdivide

> their sound sensitivity patients into folks with " loudness hyperacusis, "

> " fear hyperacusis, " and " annoyance hyperacusis " - and they have

> developed some very nice treatment protocols based upon into which group

> or groups any given patient might fall. Well, guess what? Just as 4S

> is considered to be illegitimate by the owner of the H board, so too is

> use of the University of Iowa categorization frowned upon and

> discouraged. Makes you wonder, no?

>

> OK. With that said, I am here to learn - not to preach. 4S exists, no

> matter what anybody wants to call it. And this board is the very best

> place that a person can come to learn about it. To those of you who

> prefer that I not be here, I ask that you kindly withhold judgment - for

> a little while, anyway. And to the person who threatened to leave if I

> were allowed to participate, I understand how strongly you feel and ask

> only that you delay your decision a few weeks.

>

> Thanks much for listening.

>

> Best to all -

>

> stephen nagler

>

[Guest guest]

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.

I think

> that the H Network is best positioned to advocate for awareness of all

> forms of sound sensitivity, but just about every time in the past I

> suggested an advocacy effort to the owner of that board ... I got banned

> as a reward for my efforts. In fact, to be honest with you I am

> currently banned from there for having the unmitigated gall to suggest

> to somebody who insisted that all he had was " real real bad " hyperacusis

> that maybe something else might be going on in addition to his

> hyperacusis ... or he might have been getting better a bit quicker.

> (Yea, banned for respectfully offering an opinion that differs from the

> owner's. Does that sound at all familiar?)

Does anybody here have data

> on just how common (or uncommon) 4S is in the general population?

>

> smn

>

[Guest guest]

" Annoyance hyperacusis " .

I could live with that term! Instant annoyance on steroids sometimes.

Of course, hyperacusis is an audiologist's term for something that OTs consider

to be a part of a much wider phenomenon - sensory processing disorder (or

sensory integration disorder). For instance, many of us have other sensory

issues besides sound - e.g. reaction to seeing repetitive movements like

jiggling legs, chomping jaws, etc.

There is a lot of dispute over the classification and naming of this whole

phenomenon - not just 4S vs misophonia. It seems that different health

professions have different ways of conceptualising the same material, not

mention differences within professions.

Anyway. Welcome aboard.

>

> The University of Iowa is a highly regarded center. There they consider

> all sound sensitivity to be hyperacusis (which, incidentally, is totally

> consistent with the Greek origins of the word.) They then subdivide

> their sound sensitivity patients into folks with " loudness hyperacusis, "

> " fear hyperacusis, " and " annoyance hyperacusis " - and they have

> developed some very nice treatment protocols based upon into which group

> or groups any given patient might fall.

[Guest guest]

I have met socially two people who unexpectedly turned out to have some degree

of 4S-like symptoms. I am not especially social, either.

>

> 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]

I have met socially two people who unexpectedly turned out to have some degree

of 4S-like symptoms. I am not especially social, either.

>

> 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]

well, feck the H network...I have to admit I am a tad skeptical of some of what you say. This is a strange turn of events, but okay whatever, I'll try to roll with it. So welcome to our camp and thanks for your input!To: Soundsensitivity Sent:

Thu, February 3, 2011 3:58:48 PMSubject: 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. I

figure 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 think

that the H Network is best positioned to advocate for awareness of all

forms of sound sensitivity, but just about every time in the past I

suggested an advocacy effort to the owner of that board ... I got banned

as a reward for my efforts. In fact, to be honest with you I am

currently banned from there for having the unmitigated gall to suggest

to somebody who insisted that all he had was "real real bad" hyperacusis

that maybe something else might be going on in addition to his

hyperacusis ... or he might have been getting better a bit quicker.

(Yea, banned for respectfully offering an opinion that differs from the

owner's. Does that sound at all familiar?) So I really don't think the

H Network is going to be a good advocate for 4S awareness, even though

by numbers and history they are well positioned to do so. Then there's

ATA. Marsha's on the Board of Directors there, but it seems that ATA is

too focused on its own mission to be very helpful in awareness advocacy

for 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 awareness

advocacy, you are pretty-much on your own. Does anybody here have data

on just how common (or uncommon) 4S is in the general population?

smn

>

> Dr. Nagler, Welcome to the hood. I had my suspicions as to who

was coming, and you were one of them. I'm glad it was you... and not

the other one. Ha ha! Thank you for your introduction, I think it will

help a lot of people be less concerned. I also thank you for explaining

that you disagreed with what went down on the H Network concerning the

use of the term '4S'. The whole situation was sad, and drove almost

everyone away. I remained simply to try and help newbies who join there

that have our condition.

>

> It would be nice, if once and for all, the medical community could

become more aware of this condition, and put it into the books with a

definitive name that everyone would recognize whatever that name be. I

think awareness is key with us, because so many of us have tried to seek

help with a doctor only to receive scrunched up foreheads, big eyes, and

a "I have no clue what you are talking about" look. Then we get written

off as "crazy" and given all sorts of drugs because certainly it must be

OCD or we are just too high strung, etc... The fact remains that

doctors just don't know that this is REAL.

>

> I believe you being here is a good thing. You have a strong

connection to the field and can be a voice where we cannot be. Thank

you for that.

>

> Darlene

[Guest guest]

well, feck the H network...I have to admit I am a tad skeptical of some of what you say. This is a strange turn of events, but okay whatever, I'll try to roll with it. So welcome to our camp and thanks for your input!To: Soundsensitivity Sent:

Thu, February 3, 2011 3:58:48 PMSubject: 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. I

figure 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 think

that the H Network is best positioned to advocate for awareness of all

forms of sound sensitivity, but just about every time in the past I

suggested an advocacy effort to the owner of that board ... I got banned

as a reward for my efforts. In fact, to be honest with you I am

currently banned from there for having the unmitigated gall to suggest

to somebody who insisted that all he had was "real real bad" hyperacusis

that maybe something else might be going on in addition to his

hyperacusis ... or he might have been getting better a bit quicker.

(Yea, banned for respectfully offering an opinion that differs from the

owner's. Does that sound at all familiar?) So I really don't think the

H Network is going to be a good advocate for 4S awareness, even though

by numbers and history they are well positioned to do so. Then there's

ATA. Marsha's on the Board of Directors there, but it seems that ATA is

too focused on its own mission to be very helpful in awareness advocacy

for 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 awareness

advocacy, you are pretty-much on your own. Does anybody here have data

on just how common (or uncommon) 4S is in the general population?

smn

>

> Dr. Nagler, Welcome to the hood. I had my suspicions as to who

was coming, and you were one of them. I'm glad it was you... and not

the other one. Ha ha! Thank you for your introduction, I think it will

help a lot of people be less concerned. I also thank you for explaining

that you disagreed with what went down on the H Network concerning the

use of the term '4S'. The whole situation was sad, and drove almost

everyone away. I remained simply to try and help newbies who join there

that have our condition.

>

> It would be nice, if once and for all, the medical community could

become more aware of this condition, and put it into the books with a

definitive name that everyone would recognize whatever that name be. I

think awareness is key with us, because so many of us have tried to seek

help with a doctor only to receive scrunched up foreheads, big eyes, and

a "I have no clue what you are talking about" look. Then we get written

off as "crazy" and given all sorts of drugs because certainly it must be

OCD or we are just too high strung, etc... The fact remains that

doctors just don't know that this is REAL.

>

> I believe you being here is a good thing. You have a strong

connection to the field and can be a voice where we cannot be. Thank

you for that.

>

> Darlene

[Guest guest]

Mr. Nagler, I am glad that you have joined the group. I think that anybody who has an open mind to this condition and who is interested in learning about it is welcome. My daughter has had it for 6 years and it still boggles my mind that it exists. However, it unfortunately is a very real condition that affects so many people. Hopefully some day we will get the research we need. Thanks,Kathy Howe From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 11:03 AMTo: Soundsensitivity Subject: New Here - and an explanation ... Get great advice about dogs and cats. Visit the Dog & Cat Answers Center.Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use.

[Guest guest]

Mr. Nagler, I am glad that you have joined the group. I think that anybody who has an open mind to this condition and who is interested in learning about it is welcome. My daughter has had it for 6 years and it still boggles my mind that it exists. However, it unfortunately is a very real condition that affects so many people. Hopefully some day we will get the research we need. Thanks,Kathy Howe From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of SeriouslyConsiderTheCatSent: Thursday, February 03, 2011 11:03 AMTo: Soundsensitivity Subject: New Here - and an explanation ... Get great advice about dogs and cats. Visit the Dog & Cat Answers Center.Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use.

[Guest guest]

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]

Meow ,Welcome to the group and I appreciate your candor. I will seriously consider your participation and enjoy what your thoughts bring to the group.JRSent from my iPad

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 this

board and hopefully allay some of your concerns.

I do not have 4S or any other kind of sound sensitivity, but I am very

interested in learning about the issues facing people with 4S and how

they address those issues. At this early point in my understanding, I

do not believe that broadband sound will have any widespread

effectiveness in 4S, but I do remain open-minded in that regard. My

reasons for wanting to be here lie more in the realm of the intellectual

and compassionate. Also, I teach hearing healthcare professionals about

tinnitus and sound sensitivity. I gave a presentation to some 100 last

week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

audiologists in the Phoenix area later this month. The more I know

about 4S, the better those presentations will be - and the more those in

my 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 was

absolutely furious with the owner of the H board for banning the term

from being used there. I mean, how small-minded can one get??!! There

was also a campaign to get the "4S" and "Selective Sound Sensitivity

Syndrome" pages removed from Wikipedia. I want you to know that I was

not part of that campaign.

The main problem in all this has to do with lack of uniformity and

agreement in terminology. For instance, I see on the main page of this

board that "misophonia" is defined as a general dislike of all sound.

If that is the definition of misophonia, then absolutely without

question 4S deserves a category of its own. Turns out, however, that

while some might view misophonia as a dislike of all sound, Dr.

Jastreboff defines it as an aversive response to [some] sound due to

activation of the limbic and autonomic nervous systems. Well, that

definition fits 4S perfectly in terms of its being selective, involving

triggers, involving emotion, and involving "fight or flight." So, since

I happen to like the way Dr. Jastreboff defines things, I personally do

not prefer a separate 4S categorization. But that's a personal feeling

- not some sort of edict. Moreover, by prohibiting any reference to 4S

on the H board, the owner there has effectively excluded input from a

very important contingent of folks with sound sensitivity. To me that

is unacceptable.

I'll say one other thing about terminology and then conclude with a

request. Turns out that there are very legitimate ways of looking at

sound sensitivity that do not specifically refer to misophonia or to 4S.

The University of Iowa is a highly regarded center. There they consider

all sound sensitivity to be hyperacusis (which, incidentally, is totally

consistent with the Greek origins of the word.) They then subdivide

their sound sensitivity patients into folks with "loudness hyperacusis,"

"fear hyperacusis," and "annoyance hyperacusis" - and they have

developed some very nice treatment protocols based upon into which group

or groups any given patient might fall. Well, guess what? Just as 4S

is considered to be illegitimate by the owner of the H board, so too is

use of the University of Iowa categorization frowned upon and

discouraged. Makes you wonder, no?

OK. With that said, I am here to learn - not to preach. 4S exists, no

matter what anybody wants to call it. And this board is the very best

place that a person can come to learn about it. To those of you who

prefer that I not be here, I ask that you kindly withhold judgment - for

a little while, anyway. And to the person who threatened to leave if I

were allowed to participate, I understand how strongly you feel and ask

only that you delay your decision a few weeks.

Thanks much for listening.

Best to all -

stephen nagler

[Guest guest]

How could we survey a large portion of the population with questions about being bothered by sounds?

I wouldn't be suprised if 1 out of 100 was bothered to some degree. To the 4S degree, it may be 1 out of 200 or 300. Just a wild guess. We need to get on Oprah!

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]

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]

Good question, and good place to start. If we have figures, people may pay attention.Any ideas?

Tara Economakis, Dip.AdvHyp,(N-SHAP),MCRAH,UKCP

Telephone 01488-685151/ 686881

info@...

www.lastingchanges.co.uk

To: Soundsensitivity From: michael.lawrence57@...Date: Thu, 3 Feb 2011 21:10:26 -0800Subject: RE: Re: New Here - and an explanation ...

How could we survey a large portion of the population with questions about being bothered by sounds?

I wouldn't be suprised if 1 out of 100 was bothered to some degree. To the 4S degree, it may be 1 out of 200 or 300. Just a wild guess. We need to get on Oprah!

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]

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 this

board and hopefully allay some of your concerns.

I do not have 4S or any other kind of sound sensitivity, but I am very

interested in learning about the issues facing people with 4S and how

they address those issues. At this early point in my understanding, I

do not believe that broadband sound will have any widespread

effectiveness in 4S, but I do remain open-minded in that regard. My

reasons for wanting to be here lie more in the realm of the intellectual

and compassionate. Also, I teach hearing healthcare professionals about

tinnitus and sound sensitivity. I gave a presentation to some 100 last

week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

audiologists in the Phoenix area later this month. The more I know

about 4S, the better those presentations will be - and the more those in

my 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 was

absolutely furious with the owner of the H board for banning the term

from being used there. I mean, how small-minded can one get??!! There

was also a campaign to get the "4S" and "Selective Sound Sensitivity

Syndrome" pages removed from Wikipedia. I want you to know that I was

not part of that campaign.

The main problem in all this has to do with lack of uniformity and

agreement in terminology. For instance, I see on the main page of this

board that "misophonia" is defined as a general dislike of all sound.

If that is the definition of misophonia, then absolutely without

question 4S deserves a category of its own. Turns out, however, that

while some might view misophonia as a dislike of all sound, Dr.

Jastreboff defines it as an aversive response to [some] sound due to

activation of the limbic and autonomic nervous systems. Well, that

definition fits 4S perfectly in terms of its being selective, involving

triggers, involving emotion, and involving "fight or flight." So, since

I happen to like the way Dr. Jastreboff defines things, I personally do

not prefer a separate 4S categorization. But that's a personal feeling

- not some sort of edict. Moreover, by prohibiting any reference to 4S

on the H board, the owner there has effectively excluded input from a

very important contingent of folks with sound sensitivity. To me that

is unacceptable.

I'll say one other thing about terminology and then conclude with a

request. Turns out that there are very legitimate ways of looking at

sound sensitivity that do not specifically refer to misophonia or to 4S.

The University of Iowa is a highly regarded center. There they consider

all sound sensitivity to be hyperacusis (which, incidentally, is totally

consistent with the Greek origins of the word.) They then subdivide

their sound sensitivity patients into folks with "loudness hyperacusis,"

"fear hyperacusis," and "annoyance hyperacusis" - and they have

developed some very nice treatment protocols based upon into which group

or groups any given patient might fall. Well, guess what? Just as 4S

is considered to be illegitimate by the owner of the H board, so too is

use of the University of Iowa categorization frowned upon and

discouraged. Makes you wonder, no?

OK. With that said, I am here to learn - not to preach. 4S exists, no

matter what anybody wants to call it. And this board is the very best

place that a person can come to learn about it. To those of you who

prefer that I not be here, I ask that you kindly withhold judgment - for

a little while, anyway. And to the person who threatened to leave if I

were allowed to participate, I understand how strongly you feel and ask

only that you delay your decision a few weeks.

Thanks much for listening.

Best to all -

stephen nagler

[Guest guest]

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 this

board and hopefully allay some of your concerns.

I do not have 4S or any other kind of sound sensitivity, but I am very

interested in learning about the issues facing people with 4S and how

they address those issues. At this early point in my understanding, I

do not believe that broadband sound will have any widespread

effectiveness in 4S, but I do remain open-minded in that regard. My

reasons for wanting to be here lie more in the realm of the intellectual

and compassionate. Also, I teach hearing healthcare professionals about

tinnitus and sound sensitivity. I gave a presentation to some 100 last

week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

audiologists in the Phoenix area later this month. The more I know

about 4S, the better those presentations will be - and the more those in

my 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 was

absolutely furious with the owner of the H board for banning the term

from being used there. I mean, how small-minded can one get??!! There

was also a campaign to get the "4S" and "Selective Sound Sensitivity

Syndrome" pages removed from Wikipedia. I want you to know that I was

not part of that campaign.

The main problem in all this has to do with lack of uniformity and

agreement in terminology. For instance, I see on the main page of this

board that "misophonia" is defined as a general dislike of all sound.

If that is the definition of misophonia, then absolutely without

question 4S deserves a category of its own. Turns out, however, that

while some might view misophonia as a dislike of all sound, Dr.

Jastreboff defines it as an aversive response to [some] sound due to

activation of the limbic and autonomic nervous systems. Well, that

definition fits 4S perfectly in terms of its being selective, involving

triggers, involving emotion, and involving "fight or flight." So, since

I happen to like the way Dr. Jastreboff defines things, I personally do

not prefer a separate 4S categorization. But that's a personal feeling

- not some sort of edict. Moreover, by prohibiting any reference to 4S

on the H board, the owner there has effectively excluded input from a

very important contingent of folks with sound sensitivity. To me that

is unacceptable.

I'll say one other thing about terminology and then conclude with a

request. Turns out that there are very legitimate ways of looking at

sound sensitivity that do not specifically refer to misophonia or to 4S.

The University of Iowa is a highly regarded center. There they consider

all sound sensitivity to be hyperacusis (which, incidentally, is totally

consistent with the Greek origins of the word.) They then subdivide

their sound sensitivity patients into folks with "loudness hyperacusis,"

"fear hyperacusis," and "annoyance hyperacusis" - and they have

developed some very nice treatment protocols based upon into which group

or groups any given patient might fall. Well, guess what? Just as 4S

is considered to be illegitimate by the owner of the H board, so too is

use of the University of Iowa categorization frowned upon and

discouraged. Makes you wonder, no?

OK. With that said, I am here to learn - not to preach. 4S exists, no

matter what anybody wants to call it. And this board is the very best

place that a person can come to learn about it. To those of you who

prefer that I not be here, I ask that you kindly withhold judgment - for

a little while, anyway. And to the person who threatened to leave if I

were allowed to participate, I understand how strongly you feel and ask

only that you delay your decision a few weeks.

Thanks much for listening.

Best to all -

stephen nagler

[Guest guest]

So sorry for all my typos in my last post, between using an iphone and exhaustion, they slipped by. I also posted on my facebook status, which reaches almost 2000 people. I only have that many "friends" because I travel around the world to teach swing dancing. But I am going to endeavor to get as many people to this group who have this condition as I possibly can. BTW when I teach I have a no gum rule during my classes, many people come up to me after the class and thank me. Now I wonder how many have 4S so I'm going to carry little cards with me with this discussion group's name and 's website and hand them out when people make even the slightest suggestion that they may have this. Heidi

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 this

board and hopefully allay some of your concerns.

I do not have 4S or any other kind of sound sensitivity, but I am very

interested in learning about the issues facing people with 4S and how

they address those issues. At this early point in my understanding, I

do not believe that broadband sound will have any widespread

effectiveness in 4S, but I do remain open-minded in that regard. My

reasons for wanting to be here lie more in the realm of the intellectual

and compassionate. Also, I teach hearing healthcare professionals about

tinnitus and sound sensitivity. I gave a presentation to some 100 last

week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

audiologists in the Phoenix area later this month. The more I know

about 4S, the better those presentations will be - and the more those in

my 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 was

absolutely furious with the owner of the H board for banning the term

from being used there. I mean, how small-minded can one get??!! There

was also a campaign to get the "4S" and "Selective Sound Sensitivity

Syndrome" pages removed from Wikipedia. I want you to know that I was

not part of that campaign.

The main problem in all this has to do with lack of uniformity and

agreement in terminology. For instance, I see on the main page of this

board that "misophonia" is defined as a general dislike of all sound.

If that is the definition of misophonia, then absolutely without

question 4S deserves a category of its own. Turns out, however, that

while some might view misophonia as a dislike of all sound, Dr.

Jastreboff defines it as an aversive response to [some] sound due to

activation of the limbic and autonomic nervous systems. Well, that

definition fits 4S perfectly in terms of its being selective, involving

triggers, involving emotion, and involving "fight or flight." So, since

I happen to like the way Dr. Jastreboff defines things, I personally do

not prefer a separate 4S categorization. But that's a personal feeling

- not some sort of edict. Moreover, by prohibiting any reference to 4S

on the H board, the owner there has effectively excluded input from a

very important contingent of folks with sound sensitivity. To me that

is unacceptable.

I'll say one other thing about terminology and then conclude with a

request. Turns out that there are very legitimate ways of looking at

sound sensitivity that do not specifically refer to misophonia or to 4S.

The University of Iowa is a highly regarded center. There they consider

all sound sensitivity to be hyperacusis (which, incidentally, is totally

consistent with the Greek origins of the word.) They then subdivide

their sound sensitivity patients into folks with "loudness hyperacusis,"

"fear hyperacusis," and "annoyance hyperacusis" - and they have

developed some very nice treatment protocols based upon into which group

or groups any given patient might fall. Well, guess what? Just as 4S

is considered to be illegitimate by the owner of the H board, so too is

use of the University of Iowa categorization frowned upon and

discouraged. Makes you wonder, no?

OK. With that said, I am here to learn - not to preach. 4S exists, no

matter what anybody wants to call it. And this board is the very best

place that a person can come to learn about it. To those of you who

prefer that I not be here, I ask that you kindly withhold judgment - for

a little while, anyway. And to the person who threatened to leave if I

were allowed to participate, I understand how strongly you feel and ask

only that you delay your decision a few weeks.

Thanks much for listening.

Best to all -

stephen nagler

[Guest guest]

So sorry for all my typos in my last post, between using an iphone and exhaustion, they slipped by. I also posted on my facebook status, which reaches almost 2000 people. I only have that many "friends" because I travel around the world to teach swing dancing. But I am going to endeavor to get as many people to this group who have this condition as I possibly can. BTW when I teach I have a no gum rule during my classes, many people come up to me after the class and thank me. Now I wonder how many have 4S so I'm going to carry little cards with me with this discussion group's name and 's website and hand them out when people make even the slightest suggestion that they may have this. Heidi

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 this

board and hopefully allay some of your concerns.

I do not have 4S or any other kind of sound sensitivity, but I am very

interested in learning about the issues facing people with 4S and how

they address those issues. At this early point in my understanding, I

do not believe that broadband sound will have any widespread

effectiveness in 4S, but I do remain open-minded in that regard. My

reasons for wanting to be here lie more in the realm of the intellectual

and compassionate. Also, I teach hearing healthcare professionals about

tinnitus and sound sensitivity. I gave a presentation to some 100 last

week in Baton Rouge, and I'll be speaking to 150 Au.D. students and

audiologists in the Phoenix area later this month. The more I know

about 4S, the better those presentations will be - and the more those in

my 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 was

absolutely furious with the owner of the H board for banning the term

from being used there. I mean, how small-minded can one get??!! There

was also a campaign to get the "4S" and "Selective Sound Sensitivity

Syndrome" pages removed from Wikipedia. I want you to know that I was

not part of that campaign.

The main problem in all this has to do with lack of uniformity and

agreement in terminology. For instance, I see on the main page of this

board that "misophonia" is defined as a general dislike of all sound.

If that is the definition of misophonia, then absolutely without

question 4S deserves a category of its own. Turns out, however, that

while some might view misophonia as a dislike of all sound, Dr.

Jastreboff defines it as an aversive response to [some] sound due to

activation of the limbic and autonomic nervous systems. Well, that

definition fits 4S perfectly in terms of its being selective, involving

triggers, involving emotion, and involving "fight or flight." So, since

I happen to like the way Dr. Jastreboff defines things, I personally do

not prefer a separate 4S categorization. But that's a personal feeling

- not some sort of edict. Moreover, by prohibiting any reference to 4S

on the H board, the owner there has effectively excluded input from a

very important contingent of folks with sound sensitivity. To me that

is unacceptable.

I'll say one other thing about terminology and then conclude with a

request. Turns out that there are very legitimate ways of looking at

sound sensitivity that do not specifically refer to misophonia or to 4S.

The University of Iowa is a highly regarded center. There they consider

all sound sensitivity to be hyperacusis (which, incidentally, is totally

consistent with the Greek origins of the word.) They then subdivide

their sound sensitivity patients into folks with "loudness hyperacusis,"

"fear hyperacusis," and "annoyance hyperacusis" - and they have

developed some very nice treatment protocols based upon into which group

or groups any given patient might fall. Well, guess what? Just as 4S

is considered to be illegitimate by the owner of the H board, so too is

use of the University of Iowa categorization frowned upon and

discouraged. Makes you wonder, no?

OK. With that said, I am here to learn - not to preach. 4S exists, no

matter what anybody wants to call it. And this board is the very best

place that a person can come to learn about it. To those of you who

prefer that I not be here, I ask that you kindly withhold judgment - for

a little while, anyway. And to the person who threatened to leave if I

were allowed to participate, I understand how strongly you feel and ask

only that you delay your decision a few weeks.

Thanks much for listening.

Best to all -

stephen nagler

[Guest guest]

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

You could survey a representative sample of schools.

That is one way they worked out the prevalence of OCD back in the 1980s - they

went into a sample of schools and assessed every student there. Practically

everyone goes to school during their teens, so it is relatively easy to get a

good cross-section of society. Given that 4S seems to start between 8 and 13 for

many people, interviewing all students in a number of high schools would be very

informative and interesting. While a pilot study is not conclusive, just

surveying one high school as a pilot study would help get us a ballpark figure.

Anyone got access to all students in a large high school? And where are our

trained interviewers?

>

> How could we survey a large portion of the population with  questions about

being bothered by sounds?

> I wouldn't be suprised if 1 out of 100 was bothered to some degree. To the 4S

degree, it may be 1 out of 200 or 300. Just a wild guess. We need to get on

Oprah!

> ML

[Guest guest]

That would probably work. Do we need trained interviewers or would a simple questionaire do the job?

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.That is one way they worked out the prevalence of OCD back in the 1980s - they went into a sample of schools and assessed every student there. Practically everyone goes to school during their teens, so it is relatively easy to get a good cross-section of society. Given that 4S seems to start between 8 and 13 for many people, interviewing all students in a number of high schools would be very informative and interesting. While a pilot study is not conclusive, just surveying one high school as a pilot study would help get us a ballpark figure.Anyone got access to all students in a large high school? And where are our trained interviewers?>> How could we survey a large portion of the population with questions about being bothered by sounds?> I wouldn't be suprised if 1 out of 100 was bothered to some degree. To the 4S degree, it may be 1 out of 200 or 300. Just a wild guess. We need to get on Oprah!> ML

[Guest guest]

That would probably work. Do we need trained interviewers or would a simple questionaire do the job?

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.That is one way they worked out the prevalence of OCD back in the 1980s - they went into a sample of schools and assessed every student there. Practically everyone goes to school during their teens, so it is relatively easy to get a good cross-section of society. Given that 4S seems to start between 8 and 13 for many people, interviewing all students in a number of high schools would be very informative and interesting. While a pilot study is not conclusive, just surveying one high school as a pilot study would help get us a ballpark figure.Anyone got access to all students in a large high school? And where are our trained interviewers?>> How could we survey a large portion of the population with questions about being bothered by sounds?> I wouldn't be suprised if 1 out of 100 was bothered to some degree. To the 4S degree, it may be 1 out of 200 or 300. Just a wild guess. We need to get on Oprah!> ML