Re: Dr. Veale and Dr. Jastreboff

[Guest guest]

I know from my personal experience that 4S and borderline personality

disorder can exist in the same person. The meds given for the

psychological problem of BPS do not take away or cure the 4S.

>

> I found a paper on PubMed written by a doctor re. a patient who

> wanted to be deaf. I wrote him, suggesting the person had 4S

syndrome

> instead of borderline personality disorder!!

> His reply

> thank you, I had not considered this although I don't think it

fits.

> I am attaching a copy of the paper for you

>

> If anybody wants a copy of the paper, I will send it as an

> attachment. Please email me at lindasalin@...

>

> this is the abstract

> A case is described of a patient who has a compelling and

> persistent desire to become deaf. She often kept cotton

> wool moistened with oil in her ears and was learning sign

> language. Living without sound appeared to be a severe

> form of avoidance behavior from hyperacusis and misophonia.

> She had a borderline personality disorder that

> was associated with a poor sense of self. Her desire to

> be deaf may be one aspect of gaining an identity for

> herself and to compensate for feeling like an alien and

> gaining acceptance in the Deaf community. Will a compelling

> desire for deafness ever become a recognized mental

> disorder one day for which hearing patients may be offered

> elective deafness after a period of assessment and

> living like a deaf person? Those working in the field of

> deafness should be aware that individuals may occasionally

> be seeking elective deafness or self-inflicting deafness

> to obtain a hearing aid.

>

> I also emailed Dr. Jastreboff in Atlanta asking if he had

experience

> in 4S, his reply was disconcerting:

> It is just a subset of misophonia and should be treated with

> protocols for misophonia. Sound generators are not crucial or are

> not used for it. See my web page about TRT.

> regards,

> pjj

> (PS TRT is tinnitus retraining)

>

[Guest guest]

Did Dr. Jastreboff say he treated 4S? Or whatever he said 4S was...

>

> Subject: Dr. Veale and Dr. Jastreboff

> To: Soundsensitivity

> Date: Sunday, December 7, 2008, 12:04 PM

> I found a paper on PubMed written by a doctor re. a patient

> who

> wanted to be deaf. I wrote him, suggesting the person had

> 4S syndrome

> instead of borderline personality disorder!!

> His reply

> thank you, I had not considered this although I don't

> think it fits.

> I am attaching a copy of the paper for you

>

> If anybody wants a copy of the paper, I will send it as an

> attachment. Please email me at lindasalin@...

>

> this is the abstract

> A case is described of a patient who has a compelling and

> persistent desire to become deaf. She often kept cotton

> wool moistened with oil in her ears and was learning sign

> language. Living without sound appeared to be a severe

> form of avoidance behavior from hyperacusis and misophonia.

> She had a borderline personality disorder that

> was associated with a poor sense of self. Her desire to

> be deaf may be one aspect of gaining an identity for

> herself and to compensate for feeling like an alien and

> gaining acceptance in the Deaf community. Will a compelling

> desire for deafness ever become a recognized mental

> disorder one day for which hearing patients may be offered

> elective deafness after a period of assessment and

> living like a deaf person? Those working in the field of

> deafness should be aware that individuals may occasionally

> be seeking elective deafness or self-inflicting deafness

> to obtain a hearing aid.

>

> I also emailed Dr. Jastreboff in Atlanta asking if he had

> experience

> in 4S, his reply was disconcerting:

> It is just a subset of misophonia and should be treated

> with

> protocols for misophonia. Sound generators are not crucial

> or are

> not used for it. See my web page about TRT.

> regards,

> pjj

> (PS TRT is tinnitus retraining)

[Guest guest]

lsalin, Hi,

Hi lsalin, I would like a copy of the report, but I can't read your

email address. mine is ingrid at ether.com.au.

I think this case is fascinating, and how great are you for taking

time to write to the doctor!.

I did a sign language course some years ago; I'm still not really sure

why I did that course - it had no relevance to my career and I had no

*need* to engage with the deaf community. I was very depressed at the

time (due to 4S I think) and on some level I think I was preparing

myself to become deaf, just in case this dreaded 4S led me to

something crazy to myself, like harm my ears. - which I have never

actually done, but I've thought about.

After 30 odd years of suffering and thinking I was alone with 4S,

those thoughts of self harm must have trickled down into my sub

conscious I guess. It scares me to think back over that period in my

life, it was a very low point indeed, but that was 9 years ago.

I don't feel scared or crazy since I found this group (3 months ago)

and can hold on to the fact that I am not alone in this.

I know I getting a bit off topic now, but I've spent a lot of time

recently on the Hyperacusis Network forum, and although I think people

there are well intentioned, I feel really confused and quite depressed

from being there. I'm not sure they really 'get' what the people here

are suffering with, but some people there seem so sure that we just

need to try their approaches.

So I come back here, to be with the people I know share my symptoms,

but have no answers. I reflect back on all the treatments I have tried

over the 39 years I've had 4S, including some of the treatments they

recommend there, which didn't work for me, and I start blaming myself

for not having tried hard enough, of for not *wanting* to get over

this. And my despair and depression have returned. I'm here writing

this, when I should be at work.

Despair and depression are NEVER a good look! LOL; (I'm crying now) If

we present to the medical community when depressed, then we are

treated for those disorders, and I don't think that is primarily my

problem, although clearly it becomes a problem from time to time.

But can I raise my hopes, endure the process, the expense, the time,

and the lack of clear evidence of success, and deny my own past

experience and my own understanding of my disorder and bring myself to

sign-up again for the treatments that people on the other network seem

so convinced about?

NO, I don't think I can; I'm holding out for a medical study which I

hope will try to examine the neural pathways in my brain. I think the

causes of 4S might be found there. Then I will open up to whatever

treatment options seems most likely to help correct or mask that problem.

Anyway, I'm probably projecting a lot of my own story onto the case

that this thread started on, and I'm really just sharing my own

frustration and sadness, and I'm trying not get stuck in depression

today. I am not trying to make any point!.

But I feel better for writing this. I should probably post this story

on the other network, but to be honest, I feel shamed by their

over-enthusiasm to diagnose and give advice; and today I feel too

vulnerable for that.

But my heart goes out to the person in the article, I feel that in

slightly different circumstances that could have been me.

When I feel stronger I will see if my experience may have anything to

offer there. Or perhaps I will just let that go, knowing that lsalin

has already contacted the doctor, which is as much as we can do.

Thanks for listening.

[i'm never feel good about posting when I'm depressed... it is much

easier to isolate... arghhh...

Ingrid.

>

> I found a paper on PubMed written by a doctor re. a patient who

> wanted to be deaf. I wrote him, suggesting the person had 4S syndrome

> instead of borderline personality disorder!!

> His reply

> thank you, I had not considered this although I don't think it fits.

> I am attaching a copy of the paper for you

>

> If anybody wants a copy of the paper, I will send it as an

> attachment. Please email me at lindasalin@...

>

> this is the abstract

> A case is described of a patient who has a compelling and

> persistent desire to become deaf. She often kept cotton

> wool moistened with oil in her ears and was learning sign

> language. Living without sound appeared to be a severe

> form of avoidance behavior from hyperacusis and misophonia.

> She had a borderline personality disorder that

> was associated with a poor sense of self. Her desire to

> be deaf may be one aspect of gaining an identity for

> herself and to compensate for feeling like an alien and

> gaining acceptance in the Deaf community. Will a compelling

> desire for deafness ever become a recognized mental

> disorder one day for which hearing patients may be offered

> elective deafness after a period of assessment and

> living like a deaf person? Those working in the field of

> deafness should be aware that individuals may occasionally

> be seeking elective deafness or self-inflicting deafness

> to obtain a hearing aid.

>

> I also emailed Dr. Jastreboff in Atlanta asking if he had experience

> in 4S, his reply was disconcerting:

> It is just a subset of misophonia and should be treated with

> protocols for misophonia. Sound generators are not crucial or are

> not used for it. See my web page about TRT.

> regards,

> pjj

> (PS TRT is tinnitus retraining)

>

[Guest guest]

I have a different opinion than other professionals in this field

however on this subject.

I highly respect Dr. Jastreboff.

However, I would love to meet even ONE person who has tried his

protocol for misophonia for symptoms of 4S, and who has found any

improvement at all.

Dr. Marsha

[Guest guest]

dr. pjj sounds very arrogant in that letter. a few years back,

before i found this site 'where i belong' i was checking out a

hyperacusis site where i met a woman who wrote a book called tortured

by sound and she says was helped by 'pjj' and to her, he was her

savior but after reading the book, her symptoms were nothing like

ours. she had tinnitis and sound that were just really loud where

they 'hurt'her, not put her into a 'rage' or made her cringe. she

sent me a copy of the book and she was in a kind of hell but not like

ours. i just thought i'd share that. donnie

>

> I have a different opinion than other professionals in this field

> however on this subject.

>

> I highly respect Dr. Jastreboff.

>

> However, I would love to meet even ONE person who has tried his

> protocol for misophonia for symptoms of 4S, and who has found any

> improvement at all.

>

> Dr. Marsha

>

[Guest guest]

---Dear Ingrid

I think you did get my email and I sent you a copy of the paper from

my verizon.net address,which I use most of the time. Let me know if

you got it at lindasalin@...

I am sorry you are feeling so alone and depressed, but you are not

alone. We are totally in sync with you and understand completely what

you are going through. I am hopeful for better treatment in the

future.

I think it was great that Dr. Veale wrote back to me and was

interested in learning about 4S, he did say in his email that he

never thought the person who wanted to be deaf was suffering from

something like this,,,, so maybe he will learng something and be able

to help others.

You are not alone.

> lsalin, Hi,

>

> Hi lsalin, I would like a copy of the report, but I can't read your

> email address. mine is ingrid at ether.com.au.

>

> I think this case is fascinating, and how great are you for taking

> time to write to the doctor!.

>

> I did a sign language course some years ago; I'm still not really

sure

> why I did that course - it had no relevance to my career and I had

no

> *need* to engage with the deaf community. I was very depressed at

the

> time (due to 4S I think) and on some level I think I was preparing

> myself to become deaf, just in case this dreaded 4S led me to

> something crazy to myself, like harm my ears. - which I have never

> actually done, but I've thought about.

>

> After 30 odd years of suffering and thinking I was alone with 4S,

> those thoughts of self harm must have trickled down into my sub

> conscious I guess. It scares me to think back over that period in my

> life, it was a very low point indeed, but that was 9 years ago.

>

> I don't feel scared or crazy since I found this group (3 months ago)

> and can hold on to the fact that I am not alone in this.

>

> I know I getting a bit off topic now, but I've spent a lot of time

> recently on the Hyperacusis Network forum, and although I think

people

> there are well intentioned, I feel really confused and quite

depressed

> from being there. I'm not sure they really 'get' what the people

here

> are suffering with, but some people there seem so sure that we just

> need to try their approaches.

>

> So I come back here, to be with the people I know share my symptoms,

> but have no answers. I reflect back on all the treatments I have

tried

> over the 39 years I've had 4S, including some of the treatments they

> recommend there, which didn't work for me, and I start blaming

myself

> for not having tried hard enough, of for not *wanting* to get over

> this. And my despair and depression have returned. I'm here writing

> this, when I should be at work.

>

> Despair and depression are NEVER a good look! LOL; (I'm crying now)

If

> we present to the medical community when depressed, then we are

> treated for those disorders, and I don't think that is primarily my

> problem, although clearly it becomes a problem from time to time.

>

> But can I raise my hopes, endure the process, the expense, the time,

> and the lack of clear evidence of success, and deny my own past

> experience and my own understanding of my disorder and bring myself

to

> sign-up again for the treatments that people on the other network

seem

> so convinced about?

>

> NO, I don't think I can; I'm holding out for a medical study which I

> hope will try to examine the neural pathways in my brain. I think

the

> causes of 4S might be found there. Then I will open up to whatever

> treatment options seems most likely to help correct or mask that

problem.

>

> Anyway, I'm probably projecting a lot of my own story onto the case

> that this thread started on, and I'm really just sharing my own

> frustration and sadness, and I'm trying not get stuck in depression

> today. I am not trying to make any point!.

>

> But I feel better for writing this. I should probably post this

story

> on the other network, but to be honest, I feel shamed by their

> over-enthusiasm to diagnose and give advice; and today I feel too

> vulnerable for that.

>

> But my heart goes out to the person in the article, I feel that in

> slightly different circumstances that could have been me.

>

> When I feel stronger I will see if my experience may have anything

to

> offer there. Or perhaps I will just let that go, knowing that lsalin

> has already contacted the doctor, which is as much as we can do.

>

> Thanks for listening.

> [i'm never feel good about posting when I'm depressed... it is much

> easier to isolate... arghhh...

>

> Ingrid.

>

>

>

>

>

> >

> > I found a paper on PubMed written by a doctor re. a patient who

> > wanted to be deaf. I wrote him, suggesting the person had 4S

syndrome

> > instead of borderline personality disorder!!

> > His reply

> > thank you, I had not considered this although I don't think it

fits.

> > I am attaching a copy of the paper for you

> >

> > If anybody wants a copy of the paper, I will send it as an

> > attachment. Please email me at lindasalin@

> >

> > this is the abstract

> > A case is described of a patient who has a compelling and

> > persistent desire to become deaf. She often kept cotton

> > wool moistened with oil in her ears and was learning sign

> > language. Living without sound appeared to be a severe

> > form of avoidance behavior from hyperacusis and misophonia.

> > She had a borderline personality disorder that

> > was associated with a poor sense of self. Her desire to

> > be deaf may be one aspect of gaining an identity for

> > herself and to compensate for feeling like an alien and

> > gaining acceptance in the Deaf community. Will a compelling

> > desire for deafness ever become a recognized mental

> > disorder one day for which hearing patients may be offered

> > elective deafness after a period of assessment and

> > living like a deaf person? Those working in the field of

> > deafness should be aware that individuals may occasionally

> > be seeking elective deafness or self-inflicting deafness

> > to obtain a hearing aid.

> >

> > I also emailed Dr. Jastreboff in Atlanta asking if he had

experience

> > in 4S, his reply was disconcerting:

> > It is just a subset of misophonia and should be treated with

> > protocols for misophonia. Sound generators are not crucial or

are

> > not used for it. See my web page about TRT.

> > regards,

> > pjj

> > (PS TRT is tinnitus retraining)

> >

>

[Guest guest]

--- Dr jastreboff is closing his clinic in Atlanta. They gave me his

wife's phone number in Baltimore. I'll call the office and see what

they say.....

:

>

> Did Dr. Jastreboff say he treated 4S? Or whatever he said 4S was...

>

>

>

> >

> > Subject: Dr. Veale and Dr. Jastreboff

> > To: Soundsensitivity

> > Date: Sunday, December 7, 2008, 12:04 PM

> > I found a paper on PubMed written by a doctor re. a patient

> > who

> > wanted to be deaf. I wrote him, suggesting the person had

> > 4S syndrome

> > instead of borderline personality disorder!!

> > His reply

> > thank you, I had not considered this although I don't

> > think it fits.

> > I am attaching a copy of the paper for you

> >

> > If anybody wants a copy of the paper, I will send it as an

> > attachment. Please email me at lindasalin@...

> >

> > this is the abstract

> > A case is described of a patient who has a compelling and

> > persistent desire to become deaf. She often kept cotton

> > wool moistened with oil in her ears and was learning sign

> > language. Living without sound appeared to be a severe

> > form of avoidance behavior from hyperacusis and misophonia.

> > She had a borderline personality disorder that

> > was associated with a poor sense of self. Her desire to

> > be deaf may be one aspect of gaining an identity for

> > herself and to compensate for feeling like an alien and

> > gaining acceptance in the Deaf community. Will a compelling

> > desire for deafness ever become a recognized mental

> > disorder one day for which hearing patients may be offered

> > elective deafness after a period of assessment and

> > living like a deaf person? Those working in the field of

> > deafness should be aware that individuals may occasionally

> > be seeking elective deafness or self-inflicting deafness

> > to obtain a hearing aid.

> >

> > I also emailed Dr. Jastreboff in Atlanta asking if he had

> > experience

> > in 4S, his reply was disconcerting:

> > It is just a subset of misophonia and should be treated

> > with

> > protocols for misophonia. Sound generators are not crucial

> > or are

> > not used for it. See my web page about TRT.

> > regards,

> > pjj

> > (PS TRT is tinnitus retraining)

>

[Guest guest]

Dear Dr.

Do you think it would be worth the effort to phone audiologists

locally in Florida to see if they know how to treat this?? Do you

have any suggestions of how to narrow down the list? I talked to the

big school of audiology here and they promised to get back in touch

with me and did not....

I am used to dealing with these types of issue because I have a

chronic bladder problem and hear all the time about " it is all in

your head. " or " drink cranberry juice. " -- anyway, I am trying not to

get too " down " about this situation but do need some help other than

being depressed and wanting to live under the bed with ear plugs.

Speaking of earplugs, I have tried all kinds and nothing fits in my

ear canal! Can professional ones be made, like they do for swimming?

Do they block out any sound?

Salin

---

@...> wrote:

>

> I have a different opinion than other professionals in this field

> however on this subject.

>

> I highly respect Dr. Jastreboff.

>

> However, I would love to meet even ONE person who has tried his

> protocol for misophonia for symptoms of 4S, and who has found any

> improvement at all.

>

> Dr. Marsha

>

[Guest guest]

Ingrid,

I found myself slipping into despair last night, because I've been thinking that I'm getting better with nutritional supplements, but I had a very bad day yesterday. I guess I was hoping for a miraculous recovery, but it's not going to be quite so dramatic, unfortunately. There are times, like last night, that I just can't believe I have to deal with this.

I've actually been a bit encouraged by the hyperacusis forum. I don't think they "get it" either, but there is always some benefit to looking at things from a different perspective. If I had money to burn, I'd probably try just about any crazy therapy that might offer some hope. As it is, I can afford a few vitamins, so I'm trying that. It would be extremely depressing to save up (or go into debt) for a therapy that didn't work. I agree with you--we need research into our specific condition and not dismissals that we're nothing special.

Take care,

[Guest guest]

I find that interesting. So is he saying there are different degree's

of Misophonia? Because that has been THE arguement at the hyperacusis

site... that what we have IS Misophonia... nuff said. I disagree with

that. I think Misophonia is too broad a term and there should be

categories within it. Misophonia includes dislike of loud sounds.

Personally, I like it loud! I like Marsha's term of 4S. It makes

sense to me.

> I also emailed Dr. Jastreboff in Atlanta asking if he had experience

> in 4S, his reply was disconcerting:

> It is just a subset of misophonia and should be treated with

> protocols for misophonia.

[Guest guest]

They wear you out over there I know! But I appreciate your effort and

contribution! Hang in there... we are all in this boat together. We

just need to keep it afloat!

Darlene

--- In Soundsensitivity , " ingrid.spielman "

wrote

>

> I know I getting a bit off topic now, but I've spent a lot of time

> recently on the Hyperacusis Network forum, and although I think people

> there are well intentioned, I feel really confused and quite depressed

> from being there. I'm not sure they really 'get' what the people here

> are suffering with, but some people there seem so sure that we just

> need to try their approaches.

>

> So I come back here, to be with the people I know share my symptoms,