Re: Soft Sound Sensitivity Syndrome, its origin

[Guest guest]

Hi Hammilton. I don't accept it as being related to Hyperacusis BUT

because a diagnosis of any kind is so new to me I'm still trying to

figure it all out myself. I think it's partly associated with

Obsessive disorder and from what I've read I have yet to find someone

with ssss who says that they don't have some OCD. It's so new that no

one really knows how to classify it I guess. Because MArsha works in

the field that she does, people naturally go to someone who deals

with auditory problems If they are constantly irritated by bothersome

noises. If everyone would have taken their child (or themselves) to a

psychiatrist instead I suppose it would have been studied from that

angle as opposed to the hearing disfunction angle. My family never

bothered to do either one. They just used laugh/yell therapy!

>

> Hello,

>

> I am wondering if the members of this forum could talk to me about

> their reasons for accepting the origin that Marsha promoted

in

> her first (have there been any follow ups?) article published on the

> issue.

>

> Considering the symptoms of hyperacusis, why do you support her

> thought that this is a subset of that? From the definitions I've

come

> across, hyperacusis is essentially the result of the brains

inability

> to determine how intense a sound is, causing all sounds to be

> perceived as extremely loud. With SSSS, even the selected triggers

> aren't percieved inproperly, and the reaction to them is distressing

> emotionally, disgust, and great annoyance. Those reactions are

> nothing like the reactions of hyperacusis.

>

> And seperately, could anyone tell me why they think the disorder

must

> be physiologic in nature and not psychologic? Wouldn't a

physiologic

> disorder apply to all soft sounds, or if not all, shouldn't those

> trigger sounds bother us when we make them?

>

> I too have the disorder, and have can't remember not having it, but

my

> first memory related to it was during the time when I was being

> 'taught' not to chew with my mouth open. I was primarily taught

this

> by my father, who, when I was living at home, made most of the

sounds

> I found distressing (I don't know why, but I've got some general

> ideas). Not that I wasn't incredibly distressed by other people

> making the trigger sounds, but I percieved those he made as being

more

> disgusting or annoying than the others.

>

> Please don't take my questions as an attack on what your opinions.

> Not having access to many people with the disorder (I only know of

one

> other physical person, and I haven't actually met her- a friends

> sister); However, it is my intent to conduct some research on it in

> the next year as part of an independent research project so I can

> complete the " applied " concentration of my major. These are the

> questions that I've raised as being the most relevant, and most

likely

> the questions I would want to base survey questions around (if I can

> find a source to distribute the surveys through). I value any

> feedback I can get,

>

> Thanks!

>

> Hammilton

>

[Guest guest]

Considering the symptoms of hyperacusis, why do you support her

thought that this is a subset of that? From the definitions I've come

across, hyperacusis is essentially the result of the brains inability

to determine how intense a sound is, causing all sounds to be

perceived as extremely loud. With SSSS, even the selected triggers

aren't percieved inproperly, and the reaction to them is distressing

emotionally, disgust, and great annoyance. Those reactions are

nothing like the reactions of hyperacusis.

I for one have always had some trouble with taking the "experts" word

for it, with regard to most things. And going from my own experience

with this condition, as well as from what I've read on the boards here

(mind you I don't read everything--the emails come in now faster than I

can keep up with them) I'm inclined to believe that the problem is

neurological, but with psychological post traumatic "aftershocks"

caused by the having to interact with people and cultures that are

unwilling to work with the needs of a sound sensitive.

I have a step son now who has been diagnosed with mild autism. He is

incapable of dealing with certain sounds--and believe me you when I say

I've got him dialed in. I know exactly what's happening in his head

when he's confronted with the sort of sounds that distress him--his

brains scramble like beaten eggs and he becomes disoriented and

overstimulated.

I wouldn't be surprised if our sound sensitivity issues might be

related in some way to mild autism--in this way at least it strikes me

as a neurological disorder, via chemistry or general wiring. The

effects of overstimulation through contact with noise disturbances is

of peculiar interest to me because this is what I experience, and I'm

pretty sure it's also what a lot of others experience without actually

realizing it. Overstimulation is pretty subtle in many respects, and it

scrambles the circuits in a way that makes it difficult to introspect

on the nature of the scrambling. What there is is some default--and

later--learned reaction to the noise disturbance. Unless the reaction

can be interrupted, however briefly, by an introspective phase of self

observation, not much more could be learned about what's happening by

the sufferer.

Hyperacusis seems to be a pretty specific condition that's more

specialized around hearing. The soft sound sensitivity issue seems not

to be wholly specific to sounds, but inclusive of other irritants,

especially visual. It's easy to block something visual out, however, in

comparison to sounds. You just look away or close your eyes, depending

on the situation. Sensitivity to visual disturbances seems less likely

to become life-disruptive than sensitivity to sound disturbances. So,

no, I don't agree that it's actually a "subset" of hyperacusis. If

anything, hyperacusis would be a subset of soft sound sensitivity (if

one must be the subset of the other) since hyperacusis seems to deal

with sounds only while soft sound sensitivity seems to deal with more

than just sounds. Personally I don't feel they're directly related,

despite some of the similarities.

Anyway, just some thoughts.

[Guest guest]

I would suggest to you that it might be a lack of understanding of the

physiological mechanism for hyperacusis that has led me to believe

that this is a sub set of that phenomena.........I can explain it all

sometime but probably not in this format. Would be better using words.

How the brain receives, detects, categorizes, and THEN perceives sound

is a very complex process. Not a straightforward one.

Most the action PRIOR To perception is happening in the lower more

primative parts of the brain, too, actually taking the pathway through

the autonomous nervous system AND the emotional center of our 'old'

brain.

So, sound can evoke PRE PERCEPTION, warm feelings it is a song you

love, and extreme fear/anxiety/increased BP, hormone flood, if it is a

predator sneaking up to eat you! Or a sound you have come to

HATE........this is why so many people with SSSS have such strong

visceral reactions to sounds, they don't just dislike them, they HATE

THEM.

The auditory system doesn't help, because now we have in SSSS, a

serious spotlight search, subconciously in partnership with the old

brain, looking for that hated object, and like a submarine

relentlessly hunting an enemy, the situation is ripe for REACTION.

If all of you are psychiatrically disordered, how come the onset

happened in childhood? No other signs for most of you? No

significant life events, molestations, crisis, trauma, warzone stuff,

nope, most of you simply noticed something weird one day and it never

went away.

I wish I had a research dollar for every HOUR of psychiatric time

spent by people with SSSS. One of my patients has seen a Psych. once

a week for 19 YEARS.

Ok. I will try to spend more time here, to try to answer some

questions and direct more people in here.

Marsha

[Guest guest]

> So far I have gathered that SOME

> also have other sensory issues, yes, but until we make some kind of

> survey that shows that most of the 150 plus people here also have

> VISUAL issues, then I am left in the dark (a pun ok?>) with out a

> good sense that auditory AND visual are always part of this syndrome.

>

> In my experience, to date, over ten years, a small percentage of

> patients mention or cite visual problems during the extensive case

> histories........

Marsha, puns are ALWAYS okay in my book!!! :-)

I'm not taking sides here, but just wondering if maybe the reason such

a small percentage of your patients have mentioned visual problems is

simply because they know you're an audiologist and you don't

specialize in other things.

I just took the new poll--of 13 people so far, 12 (including me) say

they have visual irritants, too. The more people answer, the better

we'll understand this component of things--so go for it, people! ;-)

It's interesting that, from what I've read here, *some* of the visual

irritation is directly linked to the audiological, such as being

bothered by the sound of gum chewing so much that after a while even

the sight of it has the same effect. Other things seem less directly

linked to sound or not at all--such as, for me, the sight of

people " dry washing " their hands and/or fingers together.

It's easy to get caught up in semantics, but I'd very much like to

know if " sensory defensiveness " is an overarching condition that could

be said to include SSSS as a subcomponent when the primary (or only)

stressors are sounds, or whether SSSS is a different condition

entirely, with different causes. And if the latter is the case, why

some of us seem to be (*ahem*) " lucky " enough to have both!

-Mayuri

[Guest guest]

>I just took the new poll--of 13 people so far, 12 (including me) say

>they have visual irritants, too. The more people answer, the better

>we'll understand this component of things--so go for it, people! ;-)

>

>It's interesting that, from what I've read here, *some* of the visual

>irritation is directly linked to the audiological, such as being

>bothered by the sound of gum chewing so much that after a while even

>the sight of it has the same effect. Other things seem less directly

>linked to sound or not at all--such as, for me, the sight of

>people " dry washing " their hands and/or fingers together.

>

>It's easy to get caught up in semantics, but I'd very much like to

>know if " sensory defensiveness " is an overarching condition that could

>be said to include SSSS as a subcomponent when the primary (or only)

>stressors are sounds, or whether SSSS is a different condition

>entirely, with different causes. And if the latter is the case, why

>some of us seem to be (*ahem*) " lucky " enough to have both!

I think you've made a very important point here - *some* of the visual

irritation is directly linked to the visual. I think if you asked those

twelve who have visual irritations to list exactly what the irritations are

you would probably get 12 different answers! Maybe the poll needs to be

adjusted - and that is aimed as constructive criticism for whoever set it up

;o)

[Guest guest]

I think the visual problem is simply a phobia that has developed

because of our SSSS. We know and associate the action with the sound

and the mere sight of it causes anxiety in anticipation of the sound.

[Guest guest]

My visual was there with the auditory from the very beginning, thats

just me though.

>

> I think the visual problem is simply a phobia that has developed

> because of our SSSS. We know and associate the action with the sound

> and the mere sight of it causes anxiety in anticipation of the sound.

>

[Guest guest]

I agree

with eaglewit

I personally think it’s psychological if

its silent and a glass gets raised to a mouth then I get the same response as

the sound, but if there is background noise I don’t get any reaction. So I can

say personally for me the visual stuff is psychological.

Neil

-----Original

Message-----

From:

Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of eaglewwit

Sent: Friday, May 12, 2006 11:28

AM

To:

Soundsensitivity

Subject: Re:

Soft Sound Sensitivity Syndrome, its origin

I think the visual problem is simply a

phobia that has developed

because of our SSSS. We know and associate the action with the

sound

and the mere sight of it causes anxiety in anticipation of the sound.

[Guest guest]

I'd agree with this - in *most* cases there is definitely a psychological

aspect to the visual stimuli. Personally I get minor irritation with some

visual stimuli - particularly seeing people chewing gum or the rise and fall

of the chest through breathing - but this is clearly related to the

audiological stimuli and it only affected me a long time after the hearing

problems began. To me this is simple cause and effect.

The reaction is also far less noticeable than the reaction produced by

sound and far less common.

>

>

>I agree with eaglewit

>

>I personally think it’s psychological if its silent and a glass gets raised

>to a mouth then I get the same response as the sound, but if there is

>background noise I don’t get any reaction. So I can say personally for me

>the visual stuff is psychological.

>

>Neil

>

>[mailto:Soundsensitivity ]On Behalf Of eaglewwit

>

>I think the visual problem is simply a phobia that has developed

>because of our SSSS. We know and associate the action with the sound

>and the mere sight of it causes anxiety in anticipation of the sound.

>

>

>

[Guest guest]

From: "anthro_pop" Oregon7@... on Date: Sat May 6, 2006 6:51pm(PDT)

.... most of you simply noticed something weird one day and it never went away.

Sometimes I come across a simple statement like this, and find my

life dramatically changed by it. I kid you not when I say I've suddenly

found sounds, sights, and even sensations easier to deal with than

before when I consider them this light--as ordinary life occurrences

that I've somehow just become aware of, and for whatever reason wasn't

letting go of. Suddenly I find myself saying in my head, "Oh, that's

just a normal sound etc. that I've become aware of. It's perfectly

natural and it's been happening all along. I'm just noticing it now.

Carry on."

Kind of an interesting thing. Even the whomping wump of stereo

systems has become more bearable, and that's something I

figured would never happen.

[Guest guest]

Eaglewwit said: > I think the visual problem is simply a phobia that has developed > because of our SSSS. We know and associate the action with the sound > and the mere sight of it causes anxiety in anticipation of the sound. True in some cases. Probably many, maybe even most. But what about the visuals that bother some of us that are not associated with bothersome sounds at all? For instance, like I said in my post yesterday, I am bothered by the sight of people rubbing their hands or fingers against each other. This has gotten worse over the past year or so until this one visual trigger, and this one only, bothers me almost as much as the SSSS. And it makes no noise at all! (Or at least none that I'm ever in a place quiet enough to hear.) Neil brought up something intriguing with: > I agree with eaglewit> I

personally think it’s psychological if its silent and a glass gets raised > to a mouth then I get the same response as the sound, but if there is > background noise I don’t get any reaction. So I can say personally for me > the visual stuff is psychological.I've noticed that for me, it matters if I know what's causing a sound or not. One of my own trigger sounds is hard-soled shoes on hard floor or pavement. (I'd outlaw high heels if I could!) If I'm at work, let's say, and I hear a sharp, percussive sound like that, I react instantly as if it's shoes, with all the internal "fight or flight" goodies that the SSSS brings. Then I look around and see where the sound is coming from. If it really is shoes on our linoleum kitchen floor (unfortunately a mere 25 feet from my cubicle), my reaction pattern stays triggered, but if it's maybe a guy in the next office tapping a ruler against his desk while he's talking on the phone,

I'll instantly relax somewhat because it's not really "that" noise. Has anyone else noticed anything like this in themselves? So there's definitely a psychological component for me, but my instinct tells me that it's secondary, and comes from the thousands upon thousands of reactions which have pummeled my neurological system over the years *because* of the underlying physiological cause, whatever that is. -Mayuri

[Guest guest]

I'm exactly the same. My worst trigger is the chirping of those cell phones, and if I hear even a similar sound, my system immediately reacts. I always look for the source of the sound (don't know why- maybe I feel I have more control that way?). Anyway, if the sound is not coming from a cell phone, I can relax with it. Kathleen Mayuri Mandel wrote: Eaglewwit said: > I think the visual problem is simply a phobia that has developed > because of our SSSS. We know and associate the action with the sound > and the mere sight of it causes anxiety in anticipation of the sound. True in some cases. Probably many, maybe even most. But what about the visuals that bother some of us

that are not associated with bothersome sounds at all? For instance, like I said in my post yesterday, I am bothered by the sight of people rubbing their hands or fingers against each other. This has gotten worse over the past year or so until this one visual trigger, and this one only, bothers me almost as much as the SSSS. And it makes no noise at all! (Or at least none that I'm ever in a place quiet enough to hear.) Neil brought up something intriguing with: > I agree with eaglewit> I personally think it’s psychological if its silent and a glass gets raised > to a mouth then I get the same response as the sound, but if there is > background noise I don’t get any reaction. So I can say personally for me > the visual stuff is psychological.I've noticed that for me, it matters if I know what's causing a sound or not. One of my own trigger sounds is

hard-soled shoes on hard floor or pavement. (I'd outlaw high heels if I could!) If I'm at work, let's say, and I hear a sharp, percussive sound like that, I react instantly as if it's shoes, with all the internal "fight or flight" goodies that the SSSS brings. Then I look around and see where the sound is coming from. If it really is shoes on our linoleum kitchen floor (unfortunately a mere 25 feet from my cubicle), my reaction pattern stays triggered, but if it's maybe a guy in the next office tapping a ruler against his desk while he's talking on the phone, I'll instantly relax somewhat because it's not really "that" noise. Has anyone else noticed anything like this in themselves? So there's definitely a psychological component for me, but my instinct tells me that it's secondary, and comes from the thousands upon thousands of reactions which have pummeled my neurological system over the years *because*

of the underlying physiological cause, whatever that is. -Mayuri

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