Re: Re: Question for - PLEASE read!

[Guest guest]

Thank you Kaci and best wishes to you. Thank you for confirming my suspicions so eloquently.To: "Soundsensitivity " <Soundsensitivity >Sent: Tue, December 13, 2011 7:13:56 PMSubject: Re: Re: Question for -

PLEASE read!

I'm going to stop recieving emails from this group as well, it's too much to keep up with. While I appreciate any and all people looking into different angles of possible causes/treatments, I think it is important to be open minded for BOTH sufferers, AND Doctors. Here is my issue with your angle ....MOST of us as sufferers started experiencing this rage/panic reaction to certain sounds in childhood around 9 years old....this can NOT be caused by rapid weight gain/loss etc. Many of us had no issues with chronic ear infections, no issues in childbirth, etc. My hearing is fine, This is not a discomfort in the ear, or with the sounds, but a mental discomfort BECAUSE of the sounds. It's really hard to make that make sense to

someone who has not

experienced it, because it doesn't make sense to those of us who experience it EVERY DAY.....many of us are finding it gets worse and worse, and that there are visual triggers as well as noise triggers. I would never want to tell someone to stop looking into misophonia, but at the same time, listen to what the people are saying to get the best information you can. I'm glad there is more attention being shed, and I hope you all continue to fight for understanding, and find peace in your own ways. I will remain on the miso/4s Facebook group where the vibe is a little more pleasant and less high maintanance, and will remain a member of this group, but will most likely not be posting very often. Best wishes to you all, sincerelyxoxo Kaci Anne McCall Professional FACE PAINTING, personalized crafts, and more! Please visit:http://www.MysticalRainbowCreations.com "What a privilege to be here on the planet to contribute your unique donation to humankind. Each face in the rainbow of colors that populate our world is precious and special." ~ Dees To: Soundsensitivity Sent: Tuesday, December 13, 2011 2:43 PM Subject: Re: Question for - PLEASE read!

I do not have misophonia, but sometimes if I wake up with a blocked ear I find the radio too loud (audiosensitivity, due to endolymphatic hydrops). I am pretty sure I know the cause of audiosensitivity, but even if I am wrong, it must be far easier to find out the cause of AS than MA, and they are clearly related in some way. I think the experts agree there is a much raised incidence of ear problems in MA.

The reason I am on this site and not on the more ENT/medical/hyperacusis sites is that I think it is vitally important for everyone, especially someone like myself with unorthodox views, to avoid the "Filter Bubble" or Echo Chamber effect. We all, patients and doctors need constant exposure to uncomfortable ideas. So the quickest way to get me off this site is to start agreeing with my theories, as I will then think that at long last they are being taken seriously and my experimental AS results will be checked, so that I can then move on to some other topic.

You say I am misdiagnosing you, yet you admit to having some of the problems on my list below (which ones?), any one of which flags up the ear. It makes no difference what the cause of any ear problem is, and loudness perception in the cochlea changes with age.

Audiosensitivity involves aversion to loud sounds, but all sound are not equal. It is always worse for sharp high-pitch sounds.

So if you are interested in trying to work out the cause of MA, and in seeing things from a different angle, you should certainly stay on this site. Misophonics are going to have to sort this out by themselves, as doctors are years behind the curve.

**********************************************************************

> > > > > > > > > >

> > > > > > > > > > I am very concerned about how upset my 11 year old daughter is

>

> > > > > > >getting...more so each day, it seems...with her sensitivity to sounds.

> >It pains

> >

> > > > > > >me to see her cry, wondering why she has to feel this way. I can only

> >offer

> >

> > > > > > >suggestions, but because it's so new to her, and she's so young, I

> >know, to her,

> >

> > > > > > >it seems hopeless right now. Can any of you offer me advice about

> >where to start

> >

> > > > > > >with getting her help outside of our home? Do we talk to her regular

> >doctor

> >

> > > > > > >initially? I'm just not sure where to begin Thank you all.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Marnie,

I know this will sound stupid, but would an ENT diagnose this?

To: "Soundsensitivity " <Soundsensitivity >Sent: Tue, December 13, 2011 10:15:07 PMSubject: Re: Re: Question for - PLEASE read!

- the test results told me that I have a unilateral weakness in my right ear. It is a vestibular disorder. It really impairs my daily functioning. If you think you could have this then I would go and get tested.

:)Marnie

To: Soundsensitivity Sent: Tuesday, December 13, 2011 3:34 PMSubject: Re: Re: Question for - PLEASE read!

Marnie, what did the test results tell you about being dizzy?

To: Soundsensitivity Sent: Tue, December 13, 2011 1:37:55 PMSubject: Re: Re: Question for - PLEASE read!

Thanks! I will look into it.

I took a hearing and balance test done by an audiologist. It's worth it to check it out!!

To: Soundsensitivity Sent: Tuesday, December 13, 2011 2:28 PMSubject: Re: Re: Question for - PLEASE read!

No I never have.. I probably should. I just dealt with it.. but now that you point this out, I wonder if they are related in any way?

Have you gotten it checked out ever?

To: "Soundsensitivity " <Soundsensitivity > Sent: Tuesday, December 13, 2011 2:10 PMSubject: Re: Re: Question for - PLEASE read!

I do have some dizziness and definitely motion sickness!

Sent from my iPhone

I was hoping in the past to see that others suffered with dizziness along with misophonia however I have not found anyone else on here who has related to me as of yet. I clearly have both but the onset of the misophonia was in childhood while the dizziness was in adulthood. I am open to any possibilities and to think that the two could be linked together somehow. One thing I know for sure is that the dizziness certainly aggravates the misophonia even more.

So my question to everyone----Does anyone else in this support group suffer from dizziness, motion sickness, vertigo, or balance problems???????

To: Soundsensitivity Sent: Tuesday, December 13, 2011 9:29 AMSubject: Re: Question for - PLEASE read!

The finding of unilateral weakness confirms beyond doubt that there is an ear problem, and the origin of the dizziness. I worked for years in the hospital where the Cawthorne-Cooksey exercises were developed, but they seemed to have been abandoned. One reason may have been that they were not very effective for fluctuating vestibular disorders, which presented a moving target so to speak. In patients with Meniere's disease or Meniere Spectrum Disorder I invariably found bilateral audiosensitity, no matter how unilateral the disease seemed to be. This to me indicates a general body hydration problem, not that there must be a central brain cause for AS as others assume.

In an individual case it may be unclear what the relation of the misophonia to the ear may be, but once one sees many people with a similar story, even on this site, the conclusion of some sort of link is inescapable.**********************************************************************> > > > > >> > > > > > , can I ask if you if you see any benefits in going to an ENT for 4S?> > > > > & g

[Guest guest]

Marnie,

I know this will sound stupid, but would an ENT diagnose this?

To: "Soundsensitivity " <Soundsensitivity >Sent: Tue, December 13, 2011 10:15:07 PMSubject: Re: Re: Question for - PLEASE read!

- the test results told me that I have a unilateral weakness in my right ear. It is a vestibular disorder. It really impairs my daily functioning. If you think you could have this then I would go and get tested.

:)Marnie

To: Soundsensitivity Sent: Tuesday, December 13, 2011 3:34 PMSubject: Re: Re: Question for - PLEASE read!

Marnie, what did the test results tell you about being dizzy?

To: Soundsensitivity Sent: Tue, December 13, 2011 1:37:55 PMSubject: Re: Re: Question for - PLEASE read!

Thanks! I will look into it.

I took a hearing and balance test done by an audiologist. It's worth it to check it out!!

To: Soundsensitivity Sent: Tuesday, December 13, 2011 2:28 PMSubject: Re: Re: Question for - PLEASE read!

No I never have.. I probably should. I just dealt with it.. but now that you point this out, I wonder if they are related in any way?

Have you gotten it checked out ever?

To: "Soundsensitivity " <Soundsensitivity > Sent: Tuesday, December 13, 2011 2:10 PMSubject: Re: Re: Question for - PLEASE read!

I do have some dizziness and definitely motion sickness!

Sent from my iPhone

I was hoping in the past to see that others suffered with dizziness along with misophonia however I have not found anyone else on here who has related to me as of yet. I clearly have both but the onset of the misophonia was in childhood while the dizziness was in adulthood. I am open to any possibilities and to think that the two could be linked together somehow. One thing I know for sure is that the dizziness certainly aggravates the misophonia even more.

So my question to everyone----Does anyone else in this support group suffer from dizziness, motion sickness, vertigo, or balance problems???????

To: Soundsensitivity Sent: Tuesday, December 13, 2011 9:29 AMSubject: Re: Question for - PLEASE read!

The finding of unilateral weakness confirms beyond doubt that there is an ear problem, and the origin of the dizziness. I worked for years in the hospital where the Cawthorne-Cooksey exercises were developed, but they seemed to have been abandoned. One reason may have been that they were not very effective for fluctuating vestibular disorders, which presented a moving target so to speak. In patients with Meniere's disease or Meniere Spectrum Disorder I invariably found bilateral audiosensitity, no matter how unilateral the disease seemed to be. This to me indicates a general body hydration problem, not that there must be a central brain cause for AS as others assume.

In an individual case it may be unclear what the relation of the misophonia to the ear may be, but once one sees many people with a similar story, even on this site, the conclusion of some sort of link is inescapable.**********************************************************************> > > > > >> > > > > > , can I ask if you if you see any benefits in going to an ENT for 4S?> > > > > & g

[Guest guest]

I agree with you purpl_barbi. To: Soundsensitivity Sent: Monday, December 12, 2011 8:08 PM Subject: Re: Question for - PLEASE read!

I've read the posts and responses concerning the origin of our misophonia and it's interesting to hear people's opinions and ideas. For myself, I'm convinced that it's an offshoot of my SPD. I do have audiosensitivity...which is part of my SPD...and I've had that ever since I can remember. The misophonia began (so far as I've noticed) in my teens, which is why it leads me to believe it's an offshoot. People with SPD do have the "fight or flight" response to certain sounds, too, and it's not just loud ones. It's where your brain is not wired to properly filter sensory input, so we can get overloaded easily from certain sounds, bright lights, too many people talking at once, loud noises, itchy fabric or clothing tags, smells, the texture of certain foods, certain types of touches...it's a long list...but you can see how people with SPD really need their quiet, alone time, too. I think my misophonia zeroes in on particular sounds (for me

it's gum snapping, whistling, sucking air between the teeth, etc) that annoy me and my SPD can't filter it out like "normal" people can. I personally don't think it has to do with ear damage.

> > > > > > > > > >

> > > > > > > > > > I am very concerned about how upset my 11 year old daughter is

> > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. It pains

> > > > > > >me to see her cry, wondering why she has to feel this way. I can only offer

> > > > > > >suggestions, but because it's so new to her, and she's so young, I know, to her,

> > > > > > >it seems hopeless right now. Can any of you offer me advice about where to start

> > > > > > >with getting her help outside of our home? Do we talk to her regular doctor

> > > > > > >initially? I'm just not sure where to begin Thank you all.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I agree with you purpl_barbi. To: Soundsensitivity Sent: Monday, December 12, 2011 8:08 PM Subject: Re: Question for - PLEASE read!

I've read the posts and responses concerning the origin of our misophonia and it's interesting to hear people's opinions and ideas. For myself, I'm convinced that it's an offshoot of my SPD. I do have audiosensitivity...which is part of my SPD...and I've had that ever since I can remember. The misophonia began (so far as I've noticed) in my teens, which is why it leads me to believe it's an offshoot. People with SPD do have the "fight or flight" response to certain sounds, too, and it's not just loud ones. It's where your brain is not wired to properly filter sensory input, so we can get overloaded easily from certain sounds, bright lights, too many people talking at once, loud noises, itchy fabric or clothing tags, smells, the texture of certain foods, certain types of touches...it's a long list...but you can see how people with SPD really need their quiet, alone time, too. I think my misophonia zeroes in on particular sounds (for me

it's gum snapping, whistling, sucking air between the teeth, etc) that annoy me and my SPD can't filter it out like "normal" people can. I personally don't think it has to do with ear damage.

> > > > > > > > > >

> > > > > > > > > > I am very concerned about how upset my 11 year old daughter is

> > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. It pains

> > > > > > >me to see her cry, wondering why she has to feel this way. I can only offer

> > > > > > >suggestions, but because it's so new to her, and she's so young, I know, to her,

> > > > > > >it seems hopeless right now. Can any of you offer me advice about where to start

> > > > > > >with getting her help outside of our home? Do we talk to her regular doctor

> > > > > > >initially? I'm just not sure where to begin Thank you all.

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

, may I ask how you were diagnossed with SPD? Is it through a regular physician?

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, December 14, 2011 8:26:09 AMSubject: Re: Re: Question for - PLEASE read!

I agree with you purpl_barbi.

To: Soundsensitivity Sent: Monday, December 12, 2011 8:08 PMSubject: Re: Question for - PLEASE read!

I've read the posts and responses concerning the origin of our misophonia and it's interesting to hear people's opinions and ideas. For myself, I'm convinced that it's an offshoot of my SPD. I do have audiosensitivity...which is part of my SPD...and I've had that ever since I can remember. The misophonia began (so far as I've noticed) in my teens, which is why it leads me to believe it's an offshoot. People with SPD do have the "fight or flight" response to certain sounds, too, and it's not just loud ones. It's where your brain is not wired to properly filter sensory input, so we can get overloaded easily from certain sounds, bright lights, too many people talking at once, loud noises, itchy fabric or clothing tags, smells, the texture of certain foods, certain types of touches...it's a long list...but you can see how people with SPD really need their quiet, alone time, too. I think my misophonia zeroes in on particular sounds (for me it's gum

snapping, whistling, sucking air between the teeth, etc) that annoy me and my SPD can't filter it out like "normal" people can. I personally don't think it has to do with ear damage. > > > > > > > > > >> > > > > > > > > > I am very concerned about how upset my 11 year old daughter is > > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. It pains > > > > > > >me to see her cry, wondering why she has to feel this way. I can only offer > > > > > > >suggestions, but because it's so new to her, and she's so young, I know, to her, > > > > > > >it seems hopeless right now. Can

any of you offer me advice about where to start > > > > > > >with getting her help outside of our home? Do we talk to her regular doctor > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

, may I ask how you were diagnossed with SPD? Is it through a regular physician?

To: "Soundsensitivity " <Soundsensitivity >Sent: Wed, December 14, 2011 8:26:09 AMSubject: Re: Re: Question for - PLEASE read!

I agree with you purpl_barbi.

To: Soundsensitivity Sent: Monday, December 12, 2011 8:08 PMSubject: Re: Question for - PLEASE read!

I've read the posts and responses concerning the origin of our misophonia and it's interesting to hear people's opinions and ideas. For myself, I'm convinced that it's an offshoot of my SPD. I do have audiosensitivity...which is part of my SPD...and I've had that ever since I can remember. The misophonia began (so far as I've noticed) in my teens, which is why it leads me to believe it's an offshoot. People with SPD do have the "fight or flight" response to certain sounds, too, and it's not just loud ones. It's where your brain is not wired to properly filter sensory input, so we can get overloaded easily from certain sounds, bright lights, too many people talking at once, loud noises, itchy fabric or clothing tags, smells, the texture of certain foods, certain types of touches...it's a long list...but you can see how people with SPD really need their quiet, alone time, too. I think my misophonia zeroes in on particular sounds (for me it's gum

snapping, whistling, sucking air between the teeth, etc) that annoy me and my SPD can't filter it out like "normal" people can. I personally don't think it has to do with ear damage. > > > > > > > > > >> > > > > > > > > > I am very concerned about how upset my 11 year old daughter is > > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. It pains > > > > > > >me to see her cry, wondering why she has to feel this way. I can only offer > > > > > > >suggestions, but because it's so new to her, and she's so young, I know, to her, > > > > > > >it seems hopeless right now. Can

any of you offer me advice about where to start > > > > > > >with getting her help outside of our home? Do we talk to her regular doctor > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

- actually the audiologist diagnosed it. The diagnosis was the result of the hearing and balance test.Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----To: <Soundsensitivity >Subject: Re: Question for - PLEASE read!Date: Wed, Dec 14, 2011 8:38 am

Marnie,

I know this will sound stupid, but would an ENT diagnose this?

To: "Soundsensitivity " <Soundsensitivity >Sent: Tue, December 13, 2011 10:15:07 PMSubject: Re: Re: Question for - PLEASE read!

- the test results told me that I have a unilateral weakness in my right ear. It is a vestibular disorder. It really impairs my daily functioning. If you think you could have this then I would go and get tested.

:)Marnie

To: Soundsensitivity Sent: Tuesday, December 13, 2011 3:34 PMSubject: Re: Re: Question for - PLEASE read!

Marnie, what did the test results tell you about being dizzy?

To: Soundsensitivity Sent: Tue, December 13, 2011 1:37:55 PMSubject: Re: Re: Question for - PLEASE read!

Thanks! I will look into it.

I took a hearing and balance test done by an audiologist. It's worth it to check it out!!

To: Soundsensitivity Sent: Tuesday, December 13, 2011 2:28 PMSubject: Re: Re: Question for - PLEASE read!

No I never have.. I probably should. I just dealt with it.. but now that you point this out, I wonder if they are related in any way?

Have you gotten it checked out ever?

To: "Soundsensitivity " <Soundsensitivity > Sent: Tuesday, December 13, 2011 2:10 PMSubject: Re: Re: Question for - PLEASE read!

I do have some dizziness and definitely motion sickness!

Sent from my iPhone

I was hoping in the past to see that others suffered with dizziness along with misophonia however I have not found anyone else on here who has related to me as of yet. I clearly have both but the onset of the misophonia was in childhood while the dizziness was in adulthood. I am open to any possibilities and to think that the two could be linked together somehow. One thing I know for sure is that the dizziness certainly aggravates the misophonia even more.

So my question to everyone----Does anyone else in this support group suffer from dizziness, motion sickness, vertigo, or balance problems???????

To: Soundsensitivity Sent: Tuesday, December 13, 2011 9:29 AMSubject: Re: Question for - PLEASE read!

The finding of unilateral weakness confirms beyond doubt that there is an ear problem, and the origin of the dizziness. I worked for years in the hospital where the Cawthorne-Cooksey exercises were developed, but they seemed to have been abandoned. One reason may have been that they were not very effective for fluctuating vestibular disorders, which presented a moving target so to speak. In patients with Meniere's disease or Meniere Spectrum Disorder I invariably found bilateral audiosensitity, no matter how unilateral the disease seemed to be. This to me indicates a general body hydration problem, not that there must be a central brain cause for AS as others assume.

In an individual case it may be unclear what the relation of the misophonia to the ear may be, but once one sees many people with a similar story, even on this site, the conclusion of some sort of link is inescapable.***In Soundsensitivity , Marnie Chapman-Lang wrote:>> I do have some of those symptoms but I do not find the misophonia to be worse in one ear. I have never been sure myself if it does relate to the ears in that way. I really felt that this audiologist I saw was correct in my diagnosis of a unilateral weakness in one ear. I actually (believe it or not) did not even bring up the misophonia because the

dizziness affects my life more because I feel sick often throughout the day. But, when I go back I will bring it up and see if she sees any correlation herself. In the meantime, I will go through with the vestibular rehab and hope that it corrects my dizziness and motion sickness problems. > > Thank you for your input.> > > > ________________________________> > To: Soundsensitivity > Sent: Monday, December 12, 2011 1:05 PM> Subject: Re: Question for - PLEASE read!> > >  > I use technical terms to be precise and concise, but even so I still seem to have been

misunderstood on this site! I assume that nowadays suitable definitions of techical terms can be found on Wikipedia. Beware, though, that different dictionaries give quite contradictory and confusing definition of sound sensitivity terms. > Your case illustrates prefectly the point I have been trying to make that the incidence of undoubted ear problems on this site is far in excess of that in the population in general, so is giving us a priceless clue as to the genesis of sound perceptual difficulties. I agree with the Jastreboffs (2004) who say hyperacusis and misophonia frequently occur together in clinical practice. So establishing the cause of the first must help understanding the second. > The vestibular test(? water in the ear canal) shows that part(s) of the vestibular organs in one(?) ear are damaged. If one ear is severely and permanently damaged (vestibular neuritis) you would feel very dizzy, off-balance and sick for weeks, but

would then recover as the nervous system reprogrammed itself and readjusted to the residual asymmetrical but constant vestibular input. So I do not think the fixed weakness directly explains 10 years of intermittent dizziness. By far the most likely, if not only cause, is inner ear pressure changes due to frequent changes in body weight, dehydration, etc., leading to Meniere Spectrum Disorder, in which case many other symptoms could be present, including> 1. Audiosensitivity, ie over-sensitivity to LOUD sounds.> 2. Pure tone hearing loss, especially if fluctuant and first seen at low frequencies.> 3. Tinnitus. > 4. Feeling of pressure/pain in your ears/head.> 5. Misophonia confined to or worse in the bad ear.> 6. Nausea, motion sickness.> 7. Poor concentration, anxiety, fatigue, etc.> It would be very helpful if you could confirm to the group if you have had any of the above, and provide any other

relevant medical information (including, possibly, the address of the clinic you went to so others can avoid it!). > *************************ilto:Soundsensitivity " href="mailto:Soundsensitivity%40yahoogroups.com" rel="nofollow" target="_blank" ymailto="mailto:Soundsensitivity%40yahoogroups.com">Soundsensitivity , Marnie Chapman-Lang <marnie0515@> wrote:> >> > - I don't know about the others but, I don't fully understand all of the technical terms you use. Can you explain some of these things any other way? On another note- I had a hearing and balance test done this past Friday because I have had issues with dizziness for about 8-10 years. I have had misophonia though for roughly 25 years. Anyway, I have no idea if these two are connected but I went for this test

because of the dizziness. I found out that I have unilateral weakness of the right ear. I guess this is a vestibular disorder? And they said I need physical therapy to work on this. Are you very familiar with this? The audiologist explained very little to me but, I have some answers now at least about my dizziness. > > > > > > > > > > ________________________________> > From: anthony g <aggordon2003@>> > To: Soundsensitivity > > Sent: Sunday, December 11, 2011 12:12 PM> > Subject: Re: Question for > > > > > >  > > > > >

> I have no idea what I have written that contradicts Adah's post below. I have published in the medical literature many examples of reflex responses; eg Young children will not do (voluntary) pure tone audiometry until they show an Orienting Reflex to sound (Sokolov); phonophobia is a conditioned fear reflex to unduly loud sound; all audiosensitive persons have abnormal stapedial muscle reflexes; musical hallucinations are a very low level reflex response to confusing tinnitus; jangling keys near certain hearing-impaired rodent strains induce reflex epileptic convulsions; total temporary blindness after minor head injury can be due to disrupted vestibular reflexes; knockouts, as in boxers, are nothing to do with the brain, but due to overstimulated inner ears, and blocked vestibulo-spinal reflexes; startle reflex; disordered vestibulo-spatial reflexes, leading to conditioned fear and anxiety (agoraphobia); etc.> > If misophonis has nothing

to do with past or present ear disorders, then the incidence of these should be the same or lower than for the population in general. Is is perfectly clear that even on this highly selective site they are in fact far commoner. Before we get neuroscientists involved, we need to sort out this vital clue.> > *********************************************************groups.com" href="mailto:Soundsensitivity%40yahoogroups.com" rel="nofollow" target="_blank" ymailto="mailto:Soundsensitivity%40yahoogroups.com">Soundsensitivity , "Greg Z." <skyskier@> wrote:> > >> > > here it is: misophonia has nothing to do with ones hearing. most persons with miso have exc hearing. the condition resides within the higher structures of the brain(neurological) where sound is processed. it seems to be a hard wired problem with faulty neuronal

connections. innocous sounds such as eating sounds produce an immediate,involuntary "fight/flight" fear response with anger/rage. i've read hundreds of accounts by sufferers looking for answers and its easy to get sidetracked with alot of diff theories that have no common thread. in fact there is no one i've come across that has said that their misophonia was caused by ear disease or cured by an ear doctor of any kind. we really need to get this into the discipline where it belongs and needed research to begin. its in the brain where sound is processed and discussions of hearing cloud the issue. > > > > > > > > > > > >> > > > > > , can I ask if you if you see any benefits in going to an ENT for 4S?> > > > > & g

[Guest guest]

- actually the audiologist diagnosed it. The diagnosis was the result of the hearing and balance test.Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----To: <Soundsensitivity >Subject: Re: Question for - PLEASE read!Date: Wed, Dec 14, 2011 8:38 am

Marnie,

I know this will sound stupid, but would an ENT diagnose this?

To: "Soundsensitivity " <Soundsensitivity >Sent: Tue, December 13, 2011 10:15:07 PMSubject: Re: Re: Question for - PLEASE read!

- the test results told me that I have a unilateral weakness in my right ear. It is a vestibular disorder. It really impairs my daily functioning. If you think you could have this then I would go and get tested.

:)Marnie

To: Soundsensitivity Sent: Tuesday, December 13, 2011 3:34 PMSubject: Re: Re: Question for - PLEASE read!

Marnie, what did the test results tell you about being dizzy?

To: Soundsensitivity Sent: Tue, December 13, 2011 1:37:55 PMSubject: Re: Re: Question for - PLEASE read!

Thanks! I will look into it.

I took a hearing and balance test done by an audiologist. It's worth it to check it out!!

To: Soundsensitivity Sent: Tuesday, December 13, 2011 2:28 PMSubject: Re: Re: Question for - PLEASE read!

No I never have.. I probably should. I just dealt with it.. but now that you point this out, I wonder if they are related in any way?

Have you gotten it checked out ever?

To: "Soundsensitivity " <Soundsensitivity > Sent: Tuesday, December 13, 2011 2:10 PMSubject: Re: Re: Question for - PLEASE read!

I do have some dizziness and definitely motion sickness!

Sent from my iPhone

I was hoping in the past to see that others suffered with dizziness along with misophonia however I have not found anyone else on here who has related to me as of yet. I clearly have both but the onset of the misophonia was in childhood while the dizziness was in adulthood. I am open to any possibilities and to think that the two could be linked together somehow. One thing I know for sure is that the dizziness certainly aggravates the misophonia even more.

So my question to everyone----Does anyone else in this support group suffer from dizziness, motion sickness, vertigo, or balance problems???????

To: Soundsensitivity Sent: Tuesday, December 13, 2011 9:29 AMSubject: Re: Question for - PLEASE read!

The finding of unilateral weakness confirms beyond doubt that there is an ear problem, and the origin of the dizziness. I worked for years in the hospital where the Cawthorne-Cooksey exercises were developed, but they seemed to have been abandoned. One reason may have been that they were not very effective for fluctuating vestibular disorders, which presented a moving target so to speak. In patients with Meniere's disease or Meniere Spectrum Disorder I invariably found bilateral audiosensitity, no matter how unilateral the disease seemed to be. This to me indicates a general body hydration problem, not that there must be a central brain cause for AS as others assume.

In an individual case it may be unclear what the relation of the misophonia to the ear may be, but once one sees many people with a similar story, even on this site, the conclusion of some sort of link is inescapable.***In Soundsensitivity , Marnie Chapman-Lang wrote:>> I do have some of those symptoms but I do not find the misophonia to be worse in one ear. I have never been sure myself if it does relate to the ears in that way. I really felt that this audiologist I saw was correct in my diagnosis of a unilateral weakness in one ear. I actually (believe it or not) did not even bring up the misophonia because the

dizziness affects my life more because I feel sick often throughout the day. But, when I go back I will bring it up and see if she sees any correlation herself. In the meantime, I will go through with the vestibular rehab and hope that it corrects my dizziness and motion sickness problems. > > Thank you for your input.> > > > ________________________________> > To: Soundsensitivity > Sent: Monday, December 12, 2011 1:05 PM> Subject: Re: Question for - PLEASE read!> > >  > I use technical terms to be precise and concise, but even so I still seem to have been

misunderstood on this site! I assume that nowadays suitable definitions of techical terms can be found on Wikipedia. Beware, though, that different dictionaries give quite contradictory and confusing definition of sound sensitivity terms. > Your case illustrates prefectly the point I have been trying to make that the incidence of undoubted ear problems on this site is far in excess of that in the population in general, so is giving us a priceless clue as to the genesis of sound perceptual difficulties. I agree with the Jastreboffs (2004) who say hyperacusis and misophonia frequently occur together in clinical practice. So establishing the cause of the first must help understanding the second. > The vestibular test(? water in the ear canal) shows that part(s) of the vestibular organs in one(?) ear are damaged. If one ear is severely and permanently damaged (vestibular neuritis) you would feel very dizzy, off-balance and sick for weeks, but

would then recover as the nervous system reprogrammed itself and readjusted to the residual asymmetrical but constant vestibular input. So I do not think the fixed weakness directly explains 10 years of intermittent dizziness. By far the most likely, if not only cause, is inner ear pressure changes due to frequent changes in body weight, dehydration, etc., leading to Meniere Spectrum Disorder, in which case many other symptoms could be present, including> 1. Audiosensitivity, ie over-sensitivity to LOUD sounds.> 2. Pure tone hearing loss, especially if fluctuant and first seen at low frequencies.> 3. Tinnitus. > 4. Feeling of pressure/pain in your ears/head.> 5. Misophonia confined to or worse in the bad ear.> 6. Nausea, motion sickness.> 7. Poor concentration, anxiety, fatigue, etc.> It would be very helpful if you could confirm to the group if you have had any of the above, and provide any other

relevant medical information (including, possibly, the address of the clinic you went to so others can avoid it!). > *************************ilto:Soundsensitivity " href="mailto:Soundsensitivity%40yahoogroups.com" rel="nofollow" target="_blank" ymailto="mailto:Soundsensitivity%40yahoogroups.com">Soundsensitivity , Marnie Chapman-Lang <marnie0515@> wrote:> >> > - I don't know about the others but, I don't fully understand all of the technical terms you use. Can you explain some of these things any other way? On another note- I had a hearing and balance test done this past Friday because I have had issues with dizziness for about 8-10 years. I have had misophonia though for roughly 25 years. Anyway, I have no idea if these two are connected but I went for this test

because of the dizziness. I found out that I have unilateral weakness of the right ear. I guess this is a vestibular disorder? And they said I need physical therapy to work on this. Are you very familiar with this? The audiologist explained very little to me but, I have some answers now at least about my dizziness. > > > > > > > > > > ________________________________> > From: anthony g <aggordon2003@>> > To: Soundsensitivity > > Sent: Sunday, December 11, 2011 12:12 PM> > Subject: Re: Question for > > > > > >  > > > > >

> I have no idea what I have written that contradicts Adah's post below. I have published in the medical literature many examples of reflex responses; eg Young children will not do (voluntary) pure tone audiometry until they show an Orienting Reflex to sound (Sokolov); phonophobia is a conditioned fear reflex to unduly loud sound; all audiosensitive persons have abnormal stapedial muscle reflexes; musical hallucinations are a very low level reflex response to confusing tinnitus; jangling keys near certain hearing-impaired rodent strains induce reflex epileptic convulsions; total temporary blindness after minor head injury can be due to disrupted vestibular reflexes; knockouts, as in boxers, are nothing to do with the brain, but due to overstimulated inner ears, and blocked vestibulo-spinal reflexes; startle reflex; disordered vestibulo-spatial reflexes, leading to conditioned fear and anxiety (agoraphobia); etc.> > If misophonis has nothing

to do with past or present ear disorders, then the incidence of these should be the same or lower than for the population in general. Is is perfectly clear that even on this highly selective site they are in fact far commoner. Before we get neuroscientists involved, we need to sort out this vital clue.> > *********************************************************groups.com" href="mailto:Soundsensitivity%40yahoogroups.com" rel="nofollow" target="_blank" ymailto="mailto:Soundsensitivity%40yahoogroups.com">Soundsensitivity , "Greg Z." <skyskier@> wrote:> > >> > > here it is: misophonia has nothing to do with ones hearing. most persons with miso have exc hearing. the condition resides within the higher structures of the brain(neurological) where sound is processed. it seems to be a hard wired problem with faulty neuronal

connections. innocous sounds such as eating sounds produce an immediate,involuntary "fight/flight" fear response with anger/rage. i've read hundreds of accounts by sufferers looking for answers and its easy to get sidetracked with alot of diff theories that have no common thread. in fact there is no one i've come across that has said that their misophonia was caused by ear disease or cured by an ear doctor of any kind. we really need to get this into the discipline where it belongs and needed research to begin. its in the brain where sound is processed and discussions of hearing cloud the issue. > > > > > > > > > > > >> > > > > > , can I ask if you if you see any benefits in going to an ENT for 4S?> > > > > & g

[Guest guest]

,

You stated in another post:

"the

point I have been trying to make that the incidence of undoubted ear

problems on this site is far in excess of that in the population in

general, so is giving us a priceless clue as to the genesis of

sound perceptual difficulties."

Once again by what scientific methods have you come about this conclusion? In other words is this fact or merely conjecture?.

Now you state that "most on this site with misophonia do not have discomfort in the ear." Forgive me for my audiological ignorance, but wouldn't discomfort often accompany the "undoubted ear problems"?

"Inner ear disorders like audiosensitivity, vertigo, tinnitus, and ear

fullness often cause EXTREME mental discomfort, which is largely

misunderstood, ignored or denied. For many reasons it is unhelpful to

regard these as primary psychiatric disorders"

Who is regarding these inner ear disorders as primary psychiatric disorders? And do you find this disturbing?In bringing up the study on children with dyslexia, are you suggesting there may be a high incidence of dyslexia in this group as well?

To: Soundsensitivity Sent: Wednesday, December 14, 2011 11:02 AM Subject: Re: Question for - PLEASE read!

I am sorry you feel like leaving, especially as it is my fault for not making myself clear. Most, though probably not all, on this site with misophonia do not have discomfort in the ear. Some also have discomfort to loud sounds, in which case they also have audiosensitivity. Inner ear disorders like audiosensitivity, vertigo, tinnitus, and ear fullness often cause EXTREME mental discomfort, which is largely misunderstood, ignored or denied. For many reasons it is unhelpful to regard these as primary psychiatric disorders.

Thank you for noting your history of misophonia from age 9, which confirms that misophonia should be understood as a developmental disorder. In my 1986 paper where I showed that middle ear stapedial reflexes were abnormal in audiosensitivity (AS), my sample was of children of that age being assessed for dyslexia. AS was very common, almost certainly as a sequel to previous ear infections in infancy. Interestingly, subtle ear abnormalities were much commoner in right than left ears.

**********************************************************************

> > > > > > > > > > >

> > > > > > > > > > > I am very concerned about how upset my 11 year old daughter

> >is

> >

> >

> > > > > > > >getting...more so each day, it seems...with her sensitivity to

> >sounds.

> >

> > >It pains

> > >

> > > > > > > >me to see her cry, wondering why she has to feel this way. I can

> >only

> >

> > >offer

> > >

> > > > > > > >suggestions, but because it's so new to her, and she's so young, I

> > >know, to her,

> > >

> > > > > > > >it seems hopeless right now. Can any of you offer me advice about

> > >where to start

> > >

> > > > > > > >with getting her help outside of our home? Do we talk to her regular

> >

> > >doctor

> > >

> > > > > > > >initially? I'm just not sure where to begin Thank you all.

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

.

[Guest guest]

This page alone is full of people with current inner ear problems, let alone previous problems that might be more relevant. There are 2443 members in this group. The people on this page, I would say is much to small of a sample to draw general conclusions about the entire group.I think the Jastreboffs have good data confirming the ear-MA link (whatever the reason). My understanding is, and I suspect you will be correcting me here, that the Jastreboff's work focused mostly on tinnitus which is often accompanied by hyperacusis, in which case it is rather obvious why those patients would go on to develope MA-a dislike of sound. Personally I have not been able to find a lot of information about the Jastreboff's data on " misophonia" over the internet, I do not read the peer reviewed literature.We don't see people on this site discussing back pain, eye disease, hypertension, etc. Yes we do see people on this site discussing those and other physical problems in the hopes of finding a common link.

I have spent so much time on this site lately, that I am afraid I have not yet got back to Google about their making public my definitive list of publications. I have to convince them I am a bona fide researcher! You have yet to convince me of that as well. : ) The vestibular system has a strong influence on the visual system, and can cause temporary blindness, migraine aura, visual hallucinations, blurred vision, etc. Some visual triggers can upset the vestibular system, see Motion Sickness on Wikipedia. Darwin was upset by the water flowing in a river.I can report that I have none of these problems listed above. Actually watching water flowing in a river makes me very very happy, especially when we are shooting rapids. Although these things probably have nothing to do with the point you are trying to make about the vestibular

system.

**********************************************************************

> > > > > > > > > > >

> > > > > > > > > > > I am very concerned about how upset my 11 year old daughter

> >is

> >

> >

> > > > > > > >getting...more so each day, it seems...with her sensitivity to

> >sounds.

> >

> > >It pains

> > >

> > > > > > > >me to see her cry, wondering why she has to feel this way. I can

> >only

> >

> > >offer

> > >

> > > > > > > >suggestions, but because it's so new to her, and she's so young, I

> > >know, to her,

> > >

> > > > > > > >it seems hopeless right now. Can any of you offer me advice about

> > >where to start

> > >

> > > > > > > >with getting her help outside of our home? Do we talk to her regular

> >

> > >doctor

> > >

> > > > > > > >initially? I'm just not sure where to begin Thank you all.

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I can definitely agree with that. Such has been the case for the past 10 years of my life. Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----To: <Soundsensitivity >Subject: Re: Question for - PLEASE read!Date: Thu, Dec 15, 2011 6:02 am

You have really hit the nail on the head here Marnie, and elegantly highlighted why ear issues like dizziness are not being dealt with properly. I cannot find evidence that anxiety, stress or fatigue directly cause dizziness, despite a long search in the medical literature. (Hyperventilation, however, is an underdiagnosed cause of dizziness). I think that most doctors, apart from top specialists, still buy into the psychosomatic model, so if they cannot find any definite medical abnormality, it must be a mental or psychological problem. If in doubt, blame the patient.

**********************************************************************

> > > > > > > > >

> > > > > > > > > Thank you, . As far as what triggered this in my daughter, I have no

> > > > > > > >idea. I can only assume it's hereditary (unfortunately), as I have the same

> > > > > > > >problem. I can't even say why it's getting worse. Maybe it's

> because I've talked

> > > > > > > >to her about it, and since she knows and understands that it's not her fault,

> > > > > > > >she's feeling like the rest of the family should instantly be able to change all

> > > > >

[Guest guest]

I can definitely agree with that. Such has been the case for the past 10 years of my life. Sent from my HTC smartphone on the Now Network from Sprint!----- Reply message -----To: <Soundsensitivity >Subject: Re: Question for - PLEASE read!Date: Thu, Dec 15, 2011 6:02 am

You have really hit the nail on the head here Marnie, and elegantly highlighted why ear issues like dizziness are not being dealt with properly. I cannot find evidence that anxiety, stress or fatigue directly cause dizziness, despite a long search in the medical literature. (Hyperventilation, however, is an underdiagnosed cause of dizziness). I think that most doctors, apart from top specialists, still buy into the psychosomatic model, so if they cannot find any definite medical abnormality, it must be a mental or psychological problem. If in doubt, blame the patient.

**********************************************************************

> > > > > > > > >

> > > > > > > > > Thank you, . As far as what triggered this in my daughter, I have no

> > > > > > > >idea. I can only assume it's hereditary (unfortunately), as I have the same

> > > > > > > >problem. I can't even say why it's getting worse. Maybe it's

> because I've talked

> > > > > > > >to her about it, and since she knows and understands that it's not her fault,

> > > > > > > >she's feeling like the rest of the family should instantly be able to change all

> > > > >

[Guest guest]

,

I'm wondering if that's why sometimes my hearing can be muddled. Once in a while it sounds like I am under water (I can hear sounds, but can not make out what the person is saying). But, every day, I have my trigger sounds. How can this be?

To: Soundsensitivity Sent: Thu, December 15, 2011 5:18:20 AMSubject: Re: Question for - PLEASE read!

You have made a really crucial observation here Katy, as this unambiguously ties down the sound sensitivity to an ear disorder. Marnie's observation that dizziness aggravates her misophonia also clearly implicates the ear. I do not necessarily believe that misophonics have current ear problems, though if so this clearly supports the view that they may have had them in the distant past when misophonia started. The sort of sound sensitivity associated with the Meniere type problems described here is normally audiosensitivity, ie aversion to loud and/or high-pitched noises, so I would be interested to know if this was not the case, and if other quieter sounds were implicated here.**********************************************************************> > > > > > > > > > > >> > > > > > > > > > > > I am very concerned about how upset my 11 year old daughter is > > > > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. It

pains > > > > > > > > >me to see her cry, wondering why she has to feel this way. I can only offer > > > > > > > > >suggestions, but because it's so new to her, and she's so young, I know, to her, > > > > > > > > >it seems hopeless right now. Can any of you offer me advice about where to start > > > > > > > > >with getting her help outside of our home? Do we talk to her regular doctor > > > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >>

> > > >> > > >> > >> >>

[Guest guest]

,

I'm wondering if that's why sometimes my hearing can be muddled. Once in a while it sounds like I am under water (I can hear sounds, but can not make out what the person is saying). But, every day, I have my trigger sounds. How can this be?

To: Soundsensitivity Sent: Thu, December 15, 2011 5:18:20 AMSubject: Re: Question for - PLEASE read!

You have made a really crucial observation here Katy, as this unambiguously ties down the sound sensitivity to an ear disorder. Marnie's observation that dizziness aggravates her misophonia also clearly implicates the ear. I do not necessarily believe that misophonics have current ear problems, though if so this clearly supports the view that they may have had them in the distant past when misophonia started. The sort of sound sensitivity associated with the Meniere type problems described here is normally audiosensitivity, ie aversion to loud and/or high-pitched noises, so I would be interested to know if this was not the case, and if other quieter sounds were implicated here.**********************************************************************> > > > > > > > > > > >> > > > > > > > > > > > I am very concerned about how upset my 11 year old daughter is > > > > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. It

pains > > > > > > > > >me to see her cry, wondering why she has to feel this way. I can only offer > > > > > > > > >suggestions, but because it's so new to her, and she's so young, I know, to her, > > > > > > > > >it seems hopeless right now. Can any of you offer me advice about where to start > > > > > > > > >with getting her help outside of our home? Do we talk to her regular doctor > > > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >>

> > > >> > > >> > >> >>

[Guest guest]

,

Your last sentence "The conditon may fluctuate, but the doctor caught them on a good day" is what worries me. I have an appointment with a doctor who was recommended on the 20/20 site. I am worried when I go to get tested I will be told I am "just fine." The part that worries me is where do I go from there?

To: Soundsensitivity Sent: Thu, December 15, 2011 8:04:05 AMSubject: Re: Question for - PLEASE read!

Thank you very much for noting that my ideas are mundane. That is precisely what they are. The history of medical advance shows that mundane ideas win out time and again. Thus we all "knew" that stress caused ulcers, and a whole industry was built around this. Then a doctor in Australia deduced that ulcers were in fact caused by a bacterium, and it is now treated with antibiotics. Medicine advances not so much by finding unknown knowns, or even unknown unknowns, but by challenging supposedly known knowns, which was the hard part for him.The mundane idea in sound sensitivity is therefore that if someone is oversensitive to loud sound, then the organ registering the sound is not working properly. One needs to be very very sure this simple explanation in incorrect before moving on to more complex, vague and hard to test alternatives, like some sort of brain damage. It is actually arrogant of otologists to pretend their knowledge of cochlear

function is so good that they can state categorically that because a patient passes test A,B or C, then that proves there can be nothing wrong with the cochlea. For a start, the condition may fluctuate but the doctor has caught them on a good day.> > > > >

> > > > > > >> > > > > > > > > > > > I am very concerned about how upset my 11 year old daughter is > > > > > > > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. > > > >It pains > > > >> > > > > > > > >me to see her cry, wondering why she has to feel this way. I can only > > > >offer > > > >> > > > > > > > >suggestions, but because it's so new to her, and she's so young, I > > > >know, to her, > > > >> > > > > > > > >it seems hopeless right now. Can any of you offer me advice about > > > >where to start > > > >> > > > > > > > >with getting her help outside of our home? Do

we talk to her regular > > > >doctor > > > >> > > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

,

Your last sentence "The conditon may fluctuate, but the doctor caught them on a good day" is what worries me. I have an appointment with a doctor who was recommended on the 20/20 site. I am worried when I go to get tested I will be told I am "just fine." The part that worries me is where do I go from there?

To: Soundsensitivity Sent: Thu, December 15, 2011 8:04:05 AMSubject: Re: Question for - PLEASE read!

Thank you very much for noting that my ideas are mundane. That is precisely what they are. The history of medical advance shows that mundane ideas win out time and again. Thus we all "knew" that stress caused ulcers, and a whole industry was built around this. Then a doctor in Australia deduced that ulcers were in fact caused by a bacterium, and it is now treated with antibiotics. Medicine advances not so much by finding unknown knowns, or even unknown unknowns, but by challenging supposedly known knowns, which was the hard part for him.The mundane idea in sound sensitivity is therefore that if someone is oversensitive to loud sound, then the organ registering the sound is not working properly. One needs to be very very sure this simple explanation in incorrect before moving on to more complex, vague and hard to test alternatives, like some sort of brain damage. It is actually arrogant of otologists to pretend their knowledge of cochlear

function is so good that they can state categorically that because a patient passes test A,B or C, then that proves there can be nothing wrong with the cochlea. For a start, the condition may fluctuate but the doctor has caught them on a good day.> > > > >

> > > > > > >> > > > > > > > > > > > I am very concerned about how upset my 11 year old daughter is > > > > > > > > > > > >getting...more so each day, it seems...with her sensitivity to sounds. > > > >It pains > > > >> > > > > > > > >me to see her cry, wondering why she has to feel this way. I can only > > > >offer > > > >> > > > > > > > >suggestions, but because it's so new to her, and she's so young, I > > > >know, to her, > > > >> > > > > > > > >it seems hopeless right now. Can any of you offer me advice about > > > >where to start > > > >> > > > > > > > >with getting her help outside of our home? Do

we talk to her regular > > > >doctor > > > >> > > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

I have had ulcers and was tested for the bacterium, it was not there. But good thing there were all these other pharmaceuticals from that built up industry, otherwise I might have ended up a bleeder. Is it not possible that stress contributes to changes to the environment of the stomach, making the stomach more vulnerable to initiation of the bacterium infection?If someone is over-senstitive to loud sounds seems very prudent to make sure the organ registering the sound is working properly. Personally, I like loud sounds! because it drowns out the particular quiet sounds that I can't stand. To: Soundsensitivity Sent: Thursday, December 15, 2011 8:04 AM Subject: Re: Question for - PLEASE read!

Thank you very much for noting that my ideas are mundane. That is precisely what they are. The history of medical advance shows that mundane ideas win out time and again. Thus we all "knew" that stress caused ulcers, and a whole industry was built around this. Then a doctor in Australia deduced that ulcers were in fact caused by a bacterium, and it is now treated with antibiotics. Medicine advances not so much by finding unknown knowns, or even unknown unknowns, but by challenging supposedly known knowns, which was the hard part for him.

The mundane idea in sound sensitivity is therefore that if someone is

oversensitive to loud sound, then the organ registering the sound is not working properly. One needs to be very very sure this simple explanation in incorrect before moving on to more complex, vague and hard to test alternatives, like some sort of brain damage. It is actually arrogant of otologists to pretend their knowledge of cochlear function is so good that they can state categorically that because a patient passes test A,B or C, then that proves there can be nothing wrong with the cochlea. For a start, the condition may fluctuate but the doctor has caught them on a good day.

> > > > > > > > >

> > > > > > > > > ,

> > > > > > > > > ÃÆ'‚ÂÂ

> > > > > > > > > Are you an Audiologist or ENT??

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > ________________________________

> > > > > > > > > From: anthony g <aggordon2003@>

> > > > > > > > > To: Soundsensitivity

> > > > > > > > > Sent: Thursday, December 8, 2011 1:14 PM

> > > > > > > > > Subject: Re: Where to start?

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > ÃÆ'‚ÂÂ

> > > > > > > > > Thank you very much for the extra information, which I think confirms

> > > >an

> > > >

> > > > > > > > >otological cause. Grommets in the eardrum allow air to enter the

> > > >middle ear, so

> > > >

> > > > > > > > >that no more fluid collects in there. Sometimes these can over-aerate

> > > >the ME, so

> > > >

> > > > > > > > >that the mucous membrane dries out and dehydrates, predisposing to low

> > > >inner ear

> > > >

> > > > > > > > >pressure and a hyperactive cochlea. Otologists may disagree with this

> > > >proposed

> > > >

> > > > > > > > >mechanism, but certainly some children become audiosensitive after

> > > >grommet

> > > >

> > > > > > > > >insertion. Although I have not seen this myself, it is now reported

> > > >that a late

> > > >

> > > > > > > > >consequence in young women is Patulous Eustachian Tube (see

> > > >Wikipedia), again

> > > >

> > > > > > > > >probably a long-term result of dehydration. I sugest you specifically

> > > >ask the

> > > >

> > > > > > > > >doctor to check for PET. One sign is chalk patches on the eardrum

> > > > > > > > >(tympanosclerosis), due I also suspect to over-aeration of the

> > > >eardrum. There

> > > >

> > > > > > > > >should be enough info on the web for you two to work out if your

> > > >daughter has

> > > >

> > > > > > > > >PET. If so, be prepared, in fact

> > > > > > > > > well-prepared, as many doctors will be dismissive.

> > > > > > > > >

>

[Guest guest]

I have had ulcers and was tested for the bacterium, it was not there. But good thing there were all these other pharmaceuticals from that built up industry, otherwise I might have ended up a bleeder. Is it not possible that stress contributes to changes to the environment of the stomach, making the stomach more vulnerable to initiation of the bacterium infection?If someone is over-senstitive to loud sounds seems very prudent to make sure the organ registering the sound is working properly. Personally, I like loud sounds! because it drowns out the particular quiet sounds that I can't stand. To: Soundsensitivity Sent: Thursday, December 15, 2011 8:04 AM Subject: Re: Question for - PLEASE read!

Thank you very much for noting that my ideas are mundane. That is precisely what they are. The history of medical advance shows that mundane ideas win out time and again. Thus we all "knew" that stress caused ulcers, and a whole industry was built around this. Then a doctor in Australia deduced that ulcers were in fact caused by a bacterium, and it is now treated with antibiotics. Medicine advances not so much by finding unknown knowns, or even unknown unknowns, but by challenging supposedly known knowns, which was the hard part for him.

The mundane idea in sound sensitivity is therefore that if someone is

oversensitive to loud sound, then the organ registering the sound is not working properly. One needs to be very very sure this simple explanation in incorrect before moving on to more complex, vague and hard to test alternatives, like some sort of brain damage. It is actually arrogant of otologists to pretend their knowledge of cochlear function is so good that they can state categorically that because a patient passes test A,B or C, then that proves there can be nothing wrong with the cochlea. For a start, the condition may fluctuate but the doctor has caught them on a good day.

> > > > > > > > >

> > > > > > > > > ,

> > > > > > > > > ÃÆ'‚ÂÂ

> > > > > > > > > Are you an Audiologist or ENT??

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > ________________________________

> > > > > > > > > From: anthony g <aggordon2003@>

> > > > > > > > > To: Soundsensitivity

> > > > > > > > > Sent: Thursday, December 8, 2011 1:14 PM

> > > > > > > > > Subject: Re: Where to start?

> > > > > > > > >

> > > > > > > > >

> > > > > > > > > ÃÆ'‚ÂÂ

> > > > > > > > > Thank you very much for the extra information, which I think confirms

> > > >an

> > > >

> > > > > > > > >otological cause. Grommets in the eardrum allow air to enter the

> > > >middle ear, so

> > > >

> > > > > > > > >that no more fluid collects in there. Sometimes these can over-aerate

> > > >the ME, so

> > > >

> > > > > > > > >that the mucous membrane dries out and dehydrates, predisposing to low

> > > >inner ear

> > > >

> > > > > > > > >pressure and a hyperactive cochlea. Otologists may disagree with this

> > > >proposed

> > > >

> > > > > > > > >mechanism, but certainly some children become audiosensitive after

> > > >grommet

> > > >

> > > > > > > > >insertion. Although I have not seen this myself, it is now reported

> > > >that a late

> > > >

> > > > > > > > >consequence in young women is Patulous Eustachian Tube (see

> > > >Wikipedia), again

> > > >

> > > > > > > > >probably a long-term result of dehydration. I sugest you specifically

> > > >ask the

> > > >

> > > > > > > > >doctor to check for PET. One sign is chalk patches on the eardrum

> > > > > > > > >(tympanosclerosis), due I also suspect to over-aeration of the

> > > >eardrum. There

> > > >

> > > > > > > > >should be enough info on the web for you two to work out if your

> > > >daughter has

> > > >

> > > > > > > > >PET. If so, be prepared, in fact

> > > > > > > > > well-prepared, as many doctors will be dismissive.

> > > > > > > > >

>

[Guest guest]

Greg Z, Would Dr. Moller be this neuroscientist quoted in the New York Times of whom you speak? I am quite impressed that you were able to persuade him to speak with you, as he does not see patients.

I do agree that psychologists can be helpful with treating the secondary psych issues, as can psychiatrists IMO. Just of curiosity, when you spoke with Dr. Moller did he have any ideas whether the psychological counseling might have a positive affect on the“physiological abnormality†that he believes " is hard-wired, like a right- or

left-handedness", leading to those hosts of secondary psych issues. I realize he is big on brain plasticity, so I am curious about that.My Doctor did suggest my seeing a nearby Audiologist who is on the list which Dr. J has provided (of 4s/misophonia-friendly Audiologists), because I suspect he, my Psychiatrist, would like me to take part in this nation-wide study/collection of data on 4s/misophonia which is already well underway. But unfortunately I cannot afford to do so at this time, I wish I could, it might help get the ball rolling toward more research. To: Soundsensitivity Sent: Thursday, December 15, 2011 10:24 AM Subject: Re: Question for - PLEASE read!

anthony has not yet addressed misophonia in his responses. and its not in the 19th century textbooks. we must move on. ENT's and neuroscientists don't believe its a hearing problem. innocuous soft sounds are incorrectly interpreted(in the brain) as "danger" leading to a fight/flight fear response which becomes conditioned over time. this fear conditioning leads to a whole host of secondary psych issues which need to be treated. a neuroscientist told me a psychologist would be much more helpful than an audiologist. he contributed to the nytimes article of joyce cohen.

> > > >

> > > > I do not have misophonia, but sometimes if I wake up with a blocked ear I

> > >find the radio too loud (audiosensitivity, due to endolymphatic hydrops). I am

> > >pretty sure I know the cause of audiosensitivity, but even if I am wrong, it

> > >must be far easier to find out the cause of AS than MA, and they are clearly

> > >related in some way. I think the experts agree there is a much raised incidence

> > >of ear problems in MA.

> > > > The reason I am on this site and not on the more ENT/medical/hyperacusis

> > >sites is that I think it is vitally important for everyone, especially someone

> > >like myself with unorthodox views, to avoid the "Filter Bubble" or Echo Chamber

> > >effect. We all, patients and doctors need constant exposure to uncomfortable

> > >ideas. So the quickest way to get me off this site is to start agreeing with my

> > >theories, as I will then think that at long last they are being taken seriously

> > >and my experimental AS results will be checked, so that I can then move on to

> > >some other topic.

> > >

> > > > You say I am misdiagnosing you, yet you admit to having some of the problems

> > >on my list below (which ones?), any one of which flags up the ear. It makes no

> > >difference what the cause of any ear problem is, and loudness perception in the

> > >cochlea changes with age.

> > > > Audiosensitivity involves aversion to loud sounds, but all sound are not

> > >equal. It is always worse for sharp high-pitch sounds.

> > > > So if you are interested in trying to work out the cause of MA, and in seeing

> > >things from a different angle, you should certainly stay on this site.

> > >Misophonics are going to have to sort this out by themselves, as doctors are

> > >years behind the curve.

> > >

[Guest guest]

I think its okay if people want to leave or take a break from the group "if " they don't like receiving the emails with more conflictual topics (which I personally believe have a place here as well). It is a personal preference to want a more harmonious agreeable atmosphere at all times, nothing wrong with that, but it shouldn't be expected at all times either IMO. Besides the facebook pages there are the public sites, where with the division of topics one can pick and choose thereby avoiding the debates. Or one can read this board here online, if one doesn't want the deluge of mail. sometimes it seems to me, instead of answering questions about your hypotheses, you go on medical-jargony tangents about things that don't always seem to relate to the question. I

can't say for sure, since I am medical-knowledge challenged but it seems like evasion. If you at least offered some kind of real data to back up your claims about the audio-sensitivity commonalities in our group, then I might take the trouble to visit wikipedia and look up the medical terminology. Do a monkey survey at least.But when it comes to your recommendations for medical tests for people here which you say doctors may be reluctant to give, I believe you are obligated to make your explanations very clear and accessible as to why the tests would be worth the extra expense, especially as you have not as of yet here, proven your credentials as an audiologist. To: Soundsensitivity Sent: Thursday, December 15, 2011 10:37 AM Subject: Re: Question for - PLEASE read!

THERE SHOULD BE NO ONE LEAVING THIS GROUP BECAUSE OF DISCOMFORT CAUSED BY ONE OR A FEW. IF I AM DEEMED TO BE ONE OF THEM, THEN I REQUEST THAT THE MODERATOR ACT APPROPRIATELY.

This site is for sufferers of Soft Sound Sensitivity/Misophonia to find answers and hope and comraderie.

If you look at the style of the contributors, you'll find respectful and easy-to-understand hypotheses or questions and then an open floor for discussion and sharing. You will rarely find a know-it-all attitude being tolerated.

You are indeed MOST highly educated and INCREDIBLY learned and your language is not easily understood by most. Since the civilians on this site do not share their research without making sure others can understand it, I expect you would too just out of simple respect. If the expectation is incorrect, please consider it a request.

Also, I do not see people on this site diagnosing one another or spouting facts on our way to answers. You post your facts and then point out later that they are theories. I too am a bona-fide researcher: I work on my own disorder because I am intimately familiar with what fits and what doesn't and I keep it to myself until I have something that makes sense.

I am blatantly pointing out that even IF you are spot-on in what you are saying it is not at all useful since your tone and verbiage are not consistent with the expectations and abilities of this group. Also, I (and others who used to) have not been posting anything of importance on this board since I have been doing nothing but trying to protect the integrity and keep the decency of the group intact and working to keep you from alarming and out-talking everyone else.

I have too much at stake in this endeavor and do my level best to avoid being identified with that old expression: If you can't dazzle them with intelligence, baffle them with bullsh**.

Warm Regards,

Adah Siganoff

Misophonia Suffer and now public with it on The Today Show and in the NY Times and reprinted all over the world.

> > > > > > >

> > > > > > > I have followed the other current thread on this topic, but had decided

> > >

> > > >not to jump in as it is quite a complex issue, and probably different in UK

> > >and

> > >

> > > >USA, so thanks !. First, I think it a waste of time going to an

> > > >ENT/otologist who has not heard of Misophonia, Patulous Eustachian Tube,

> > > >Superior Semicular Canal Dehiscence Syndrome. I can think of six reasons one

> >

> > > >would think of going to an ENT:

> > > > > > > 1. To check for an active medical condition causing sound sensitivity

> > > >problems. PET and SSCDS may be treatable.

> > > >

> > > > > > > 2. To get a diagnosis. This is risky, since the visit can be worse

> > >than

> > >

> > > >useless. For example, it is all too easy to do a pure tone audiogram, find it

> > >

> > > >normal, then conclude. illogically, that the condition cannot have an

> > >otological

> > >

> > > >component. PET, SSCDS, Meniere Spectrum Disorder, audiosensitivity, and

> > > >perilymph fistulas may all sometimes have normal PTAs. Personally, I do not

> > > >think any number of negative investigations or tests trump a clinical history

> >

> > > >which clearly implicated the ear.

> > > > > > > 3. To throw light on the genesis of misophonia in an individual case.

> > > >For example, scarring or chalk patches on the drum indicate previous ear

> > > >disease, which may be long forgotten but which I think is highly relevant.

> > > > > > > 4. To promote research on the condition in general and improve

> > > >awareness. ENTs need to be put on notice that they are going to get a lot of

> >

> > > >referrals re sound sensitivity, so they had better start reading up about it

> > > >(starting with the old textbooks of Itard and Wilde). It would help if there

> > > >were relevant articles in ENT journals.

> > > > > > > 5. To get treatment. In my experience, ENTs are very

> > > >unpsychologically-minded. Thus, a middle-aged woman with otosclerosis

> > > > > > > and psychological or psychiatric symptoms, most likely a result of the

> >

> > > >condition, would not be offered a stapedectomy. Or someone with rhythmical

> > > >tinnitus would be seen as falling into their discipline, but if this then

> > > >morphed into music this would be labelled a hallucination and the patient sent

> > >

> > > >off to a psychiatrist.

> > > > > > > 6. To get a morale boost. This varies enormously with the knowledge,

> > > >experience and empathy of an individual doctor.

> > > >

> > > > > > > If one goes to a psychologist first, any otological contribution

> >

> > > >will be ignored. They are very loth to accept simple "reductionist"

> > > >explanations for complex problems, and even if they did, would rely on the

> > > >patient or a doctor having "ruled out the ear". Basically, no profession

> > >wants

> > >

> > > >to accept responsibility for sound sensitive patients.

> > > > > > > *********************************************************************

> > > > > > > --- In Soundsensitivity , Paris <soozyqcm1@>

>

[Guest guest]

I think its okay if people want to leave or take a break from the group "if " they don't like receiving the emails with more conflictual topics (which I personally believe have a place here as well). It is a personal preference to want a more harmonious agreeable atmosphere at all times, nothing wrong with that, but it shouldn't be expected at all times either IMO. Besides the facebook pages there are the public sites, where with the division of topics one can pick and choose thereby avoiding the debates. Or one can read this board here online, if one doesn't want the deluge of mail. sometimes it seems to me, instead of answering questions about your hypotheses, you go on medical-jargony tangents about things that don't always seem to relate to the question. I

can't say for sure, since I am medical-knowledge challenged but it seems like evasion. If you at least offered some kind of real data to back up your claims about the audio-sensitivity commonalities in our group, then I might take the trouble to visit wikipedia and look up the medical terminology. Do a monkey survey at least.But when it comes to your recommendations for medical tests for people here which you say doctors may be reluctant to give, I believe you are obligated to make your explanations very clear and accessible as to why the tests would be worth the extra expense, especially as you have not as of yet here, proven your credentials as an audiologist. To: Soundsensitivity Sent: Thursday, December 15, 2011 10:37 AM Subject: Re: Question for - PLEASE read!

THERE SHOULD BE NO ONE LEAVING THIS GROUP BECAUSE OF DISCOMFORT CAUSED BY ONE OR A FEW. IF I AM DEEMED TO BE ONE OF THEM, THEN I REQUEST THAT THE MODERATOR ACT APPROPRIATELY.

This site is for sufferers of Soft Sound Sensitivity/Misophonia to find answers and hope and comraderie.

If you look at the style of the contributors, you'll find respectful and easy-to-understand hypotheses or questions and then an open floor for discussion and sharing. You will rarely find a know-it-all attitude being tolerated.

You are indeed MOST highly educated and INCREDIBLY learned and your language is not easily understood by most. Since the civilians on this site do not share their research without making sure others can understand it, I expect you would too just out of simple respect. If the expectation is incorrect, please consider it a request.

Also, I do not see people on this site diagnosing one another or spouting facts on our way to answers. You post your facts and then point out later that they are theories. I too am a bona-fide researcher: I work on my own disorder because I am intimately familiar with what fits and what doesn't and I keep it to myself until I have something that makes sense.

I am blatantly pointing out that even IF you are spot-on in what you are saying it is not at all useful since your tone and verbiage are not consistent with the expectations and abilities of this group. Also, I (and others who used to) have not been posting anything of importance on this board since I have been doing nothing but trying to protect the integrity and keep the decency of the group intact and working to keep you from alarming and out-talking everyone else.

I have too much at stake in this endeavor and do my level best to avoid being identified with that old expression: If you can't dazzle them with intelligence, baffle them with bullsh**.

Warm Regards,

Adah Siganoff

Misophonia Suffer and now public with it on The Today Show and in the NY Times and reprinted all over the world.

> > > > > > >

> > > > > > > I have followed the other current thread on this topic, but had decided

> > >

> > > >not to jump in as it is quite a complex issue, and probably different in UK

> > >and

> > >

> > > >USA, so thanks !. First, I think it a waste of time going to an

> > > >ENT/otologist who has not heard of Misophonia, Patulous Eustachian Tube,

> > > >Superior Semicular Canal Dehiscence Syndrome. I can think of six reasons one

> >

> > > >would think of going to an ENT:

> > > > > > > 1. To check for an active medical condition causing sound sensitivity

> > > >problems. PET and SSCDS may be treatable.

> > > >

> > > > > > > 2. To get a diagnosis. This is risky, since the visit can be worse

> > >than

> > >

> > > >useless. For example, it is all too easy to do a pure tone audiogram, find it

> > >

> > > >normal, then conclude. illogically, that the condition cannot have an

> > >otological

> > >

> > > >component. PET, SSCDS, Meniere Spectrum Disorder, audiosensitivity, and

> > > >perilymph fistulas may all sometimes have normal PTAs. Personally, I do not

> > > >think any number of negative investigations or tests trump a clinical history

> >

> > > >which clearly implicated the ear.

> > > > > > > 3. To throw light on the genesis of misophonia in an individual case.

> > > >For example, scarring or chalk patches on the drum indicate previous ear

> > > >disease, which may be long forgotten but which I think is highly relevant.

> > > > > > > 4. To promote research on the condition in general and improve

> > > >awareness. ENTs need to be put on notice that they are going to get a lot of

> >

> > > >referrals re sound sensitivity, so they had better start reading up about it

> > > >(starting with the old textbooks of Itard and Wilde). It would help if there

> > > >were relevant articles in ENT journals.

> > > > > > > 5. To get treatment. In my experience, ENTs are very

> > > >unpsychologically-minded. Thus, a middle-aged woman with otosclerosis

> > > > > > > and psychological or psychiatric symptoms, most likely a result of the

> >

> > > >condition, would not be offered a stapedectomy. Or someone with rhythmical

> > > >tinnitus would be seen as falling into their discipline, but if this then

> > > >morphed into music this would be labelled a hallucination and the patient sent

> > >

> > > >off to a psychiatrist.

> > > > > > > 6. To get a morale boost. This varies enormously with the knowledge,

> > > >experience and empathy of an individual doctor.

> > > >

> > > > > > > If one goes to a psychologist first, any otological contribution

> >

> > > >will be ignored. They are very loth to accept simple "reductionist"

> > > >explanations for complex problems, and even if they did, would rely on the

> > > >patient or a doctor having "ruled out the ear". Basically, no profession

> > >wants

> > >

> > > >to accept responsibility for sound sensitive patients.

> > > > > > > *********************************************************************

> > > > > > > --- In Soundsensitivity , Paris <soozyqcm1@>

>

[Guest guest]

I think its okay if people want to leave or take a break from the group "if " they don't like receiving the emails with more conflictual topics (which I personally believe have a place here as well). It is a personal preference to want a more harmonious agreeable atmosphere at all times, nothing wrong with that, but it shouldn't be expected at all times either IMO. Besides the facebook pages there are the public sites, where with the division of topics one can pick and choose thereby avoiding the debates. Or one can read this board here online, if one doesn't want the deluge of mail. sometimes it seems to me, instead of answering questions about your hypotheses, you go on medical-jargony tangents about things that don't always seem to relate to the question. I

can't say for sure, since I am medical-knowledge challenged but it seems like evasion. If you at least offered some kind of real data to back up your claims about the audio-sensitivity commonalities in our group, then I might take the trouble to visit wikipedia and look up the medical terminology. Do a monkey survey at least.But when it comes to your recommendations for medical tests for people here which you say doctors may be reluctant to give, I believe you are obligated to make your explanations very clear and accessible as to why the tests would be worth the extra expense, especially as you have not as of yet here, proven your credentials as an audiologist. To: Soundsensitivity Sent: Thursday, December 15, 2011 10:37 AM Subject: Re: Question for - PLEASE read!

THERE SHOULD BE NO ONE LEAVING THIS GROUP BECAUSE OF DISCOMFORT CAUSED BY ONE OR A FEW. IF I AM DEEMED TO BE ONE OF THEM, THEN I REQUEST THAT THE MODERATOR ACT APPROPRIATELY.

This site is for sufferers of Soft Sound Sensitivity/Misophonia to find answers and hope and comraderie.

If you look at the style of the contributors, you'll find respectful and easy-to-understand hypotheses or questions and then an open floor for discussion and sharing. You will rarely find a know-it-all attitude being tolerated.

You are indeed MOST highly educated and INCREDIBLY learned and your language is not easily understood by most. Since the civilians on this site do not share their research without making sure others can understand it, I expect you would too just out of simple respect. If the expectation is incorrect, please consider it a request.

Also, I do not see people on this site diagnosing one another or spouting facts on our way to answers. You post your facts and then point out later that they are theories. I too am a bona-fide researcher: I work on my own disorder because I am intimately familiar with what fits and what doesn't and I keep it to myself until I have something that makes sense.

I am blatantly pointing out that even IF you are spot-on in what you are saying it is not at all useful since your tone and verbiage are not consistent with the expectations and abilities of this group. Also, I (and others who used to) have not been posting anything of importance on this board since I have been doing nothing but trying to protect the integrity and keep the decency of the group intact and working to keep you from alarming and out-talking everyone else.

I have too much at stake in this endeavor and do my level best to avoid being identified with that old expression: If you can't dazzle them with intelligence, baffle them with bullsh**.

Warm Regards,

Adah Siganoff

Misophonia Suffer and now public with it on The Today Show and in the NY Times and reprinted all over the world.

> > > > > > >

> > > > > > > I have followed the other current thread on this topic, but had decided

> > >

> > > >not to jump in as it is quite a complex issue, and probably different in UK

> > >and

> > >

> > > >USA, so thanks !. First, I think it a waste of time going to an

> > > >ENT/otologist who has not heard of Misophonia, Patulous Eustachian Tube,

> > > >Superior Semicular Canal Dehiscence Syndrome. I can think of six reasons one

> >

> > > >would think of going to an ENT:

> > > > > > > 1. To check for an active medical condition causing sound sensitivity

> > > >problems. PET and SSCDS may be treatable.

> > > >

> > > > > > > 2. To get a diagnosis. This is risky, since the visit can be worse

> > >than

> > >

> > > >useless. For example, it is all too easy to do a pure tone audiogram, find it

> > >

> > > >normal, then conclude. illogically, that the condition cannot have an

> > >otological

> > >

> > > >component. PET, SSCDS, Meniere Spectrum Disorder, audiosensitivity, and

> > > >perilymph fistulas may all sometimes have normal PTAs. Personally, I do not

> > > >think any number of negative investigations or tests trump a clinical history

> >

> > > >which clearly implicated the ear.

> > > > > > > 3. To throw light on the genesis of misophonia in an individual case.

> > > >For example, scarring or chalk patches on the drum indicate previous ear

> > > >disease, which may be long forgotten but which I think is highly relevant.

> > > > > > > 4. To promote research on the condition in general and improve

> > > >awareness. ENTs need to be put on notice that they are going to get a lot of

> >

> > > >referrals re sound sensitivity, so they had better start reading up about it

> > > >(starting with the old textbooks of Itard and Wilde). It would help if there

> > > >were relevant articles in ENT journals.

> > > > > > > 5. To get treatment. In my experience, ENTs are very

> > > >unpsychologically-minded. Thus, a middle-aged woman with otosclerosis

> > > > > > > and psychological or psychiatric symptoms, most likely a result of the

> >

> > > >condition, would not be offered a stapedectomy. Or someone with rhythmical

> > > >tinnitus would be seen as falling into their discipline, but if this then

> > > >morphed into music this would be labelled a hallucination and the patient sent

> > >

> > > >off to a psychiatrist.

> > > > > > > 6. To get a morale boost. This varies enormously with the knowledge,

> > > >experience and empathy of an individual doctor.

> > > >

> > > > > > > If one goes to a psychologist first, any otological contribution

> >

> > > >will be ignored. They are very loth to accept simple "reductionist"

> > > >explanations for complex problems, and even if they did, would rely on the

> > > >patient or a doctor having "ruled out the ear". Basically, no profession

> > >wants

> > >

> > > >to accept responsibility for sound sensitive patients.

> > > > > > > *********************************************************************

> > > > > > > --- In Soundsensitivity , Paris <soozyqcm1@>

>

[Guest guest]

Thank you for the reply, ! That made sense.

To: Soundsensitivity Sent: Thu, December 15, 2011 2:47:28 PMSubject: Re: Question for - PLEASE read!

Apart from obvious middle ear infections, there is basically one common cause for fluctuating auditory problems, Meniere Spectrum Disorder (endolymphatic hydrops). I am pretty sure the fluctuation is due to variation in body hydration altering inner ear pressure. Hearing is characteristically muffled or distorted. There may be a feeling of pressure/fullness in the ear, as if it were full of water. Audiosensitivity (ie to loud sounds) will also vary along with the state of the ear, although it may be the only symptom of MSD at any one time. Some of the triggers may be conditioned reflexes to previous noises, and may well be an overgeneralised reaction. If I were testing such a person, I would rely on careful and repeated pure tone audiometry to detect slight low tone losses or fluctuant hearing but still within normal limits; a test for diplacusis; check for lowered stapedial reflex thresholds.However, I still think a convincing history trumps

negative tests.**********************************************************************> > > > > > > > >

> > > >> > > > > > > > > > > > > I am very concerned about how upset my 11 year old > >daughter is > >> > > > > > > > > >getting...more so each day, it seems...with her sensitivity to > >sounds. It pains > >> > > > > > > > > >me to see her cry, wondering why she has to feel this way. I can > >only offer > >> > > > > > > > > >suggestions, but because it's so new to her, and she's so young, > >I know, to her, > >> > > > > > > > > >it seems hopeless right now. Can any of you offer me advice > >about where to start > >> > > > > > > > > >with getting her help outside of our home? Do we talk to her > >regular doctor >

>> > > > > > > > > >initially? I'm just not sure where to begin Thank you all.> > > > > > > > > > > > >> > > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

No one should EVER be diagnosed from an email – G is a nut case, stay away.

I can’t believe all this self diagnosing, in just the last few weeks here is what some believe we have Aspergers PET, SSCDS, Meniere Spectrum Disorder, audiosensitivity, ADD, schizophrenia , Hyperacusis, Autism etc, etc etc.

Like many other conditions there can be several causes and different degrees of the condition.

I will take a break from this site because I’m not sure I can handle one more person asking if they should go to an ENT or one more self diagnosis. Again, an ENT or Audiologist is for hearing or auditory related problems they know NOTHING about 4S especially those also who have Visual Sensitivities.

I hope some common sense returns so we can move towards helping find some relief instead of listening to people who are long on opinions but short rational thinking.

An example of moving in the right direction is probably to see someone who specializes in Neurology.

To: Soundsensitivity Sent: Thursday, December 15, 2011 5:59 PMSubject: Re: Question for - PLEASE read!

hi maikaefer, yes aage moeller is the neuroscientist. i located his email address in texas and fired him an email to see if he could help all of the people(including my son) who suffer with misophonia daily. he was nice enough to answer my questions promptly and courteously,mentioning he had written a book on tinnitus which included a section on misophonia. he was consulted in joyce cohens article in the nytimes. i asked him if an audiologist or a psychologist would be more benefit and he said the psych dr. he also promised he would bring up misophonia and need for research at the next int'l conference he is attending. he is extremely intelligent and told me he will try to help. > > > > >> > > > > I do not have misophonia, but sometimes if I wake up with a blocked ear I > > > >find the radio too loud (audiosensitivity, due to endolymphatic hydrops). I am > > > >pretty sure I know the cause of audiosensitivity, but even if I am wrong, it > > > >must be far easier to find out the cause of AS than MA, and they are clearly > > > >related in some way. I think the experts agree there is a much raised incidence > > > >of ear problems in MA.> > > > > The reason I am on this site and not on the more ENT/medical/hyperacusis > > > >sites is that I think it is vitally important for everyone, especially someone > > > >like myself with unorthodox views, to avoid the "Filter Bubble" or Echo Chamber > > > >effect. We all, patients and

doctors need constant exposure to uncomfortable > > > >ideas. So the quickest way to get me off this site is to start agreeing with my > > > >theories, as I will then think that at long last they are being taken seriously > > > >and my experimental AS results will be checked, so that I can then move on to > > > >some other topic. > > > >> > > > > You say I am misdiagnosing you, yet you admit to having some of the problems > > > >on my list below (which ones?), any one of which flags up the ear. It makes no > > > >difference what the cause of any ear problem is, and loudness perception in the > > > >cochlea changes with age.> > > > > Audiosensitivity involves aversion to loud sounds, but all sound are not > > > >equal. It is always worse for sharp high-pitch sounds.>

> > > > So if you are interested in trying to work out the cause of MA, and in seeing > > > >things from a different angle, you should certainly stay on this site. > > > >Misophonics are going to have to sort this out by themselves, as doctors are > > > >years behind the curve. > > > >>