Re: Ever think we are not the ones with the problem...?

July 17, 2008

Hi Kathy -

I'm sure that, like anything else, there is a scale of intensity, and

your daughter is clearly even more sensitive than I am -- as I've

never wanted to punch someone just for scratching their lip. It's

possible for me to drown out gross noises out with headphones or

other ambient sounds - I just resent the hell out of having to do it.

How long have I been this way? Absolutely as long as I can remember.

I must have been taught to eat and behave properly as a very little

kid, because even in kindergarden I was repulsed at the sound, sight,

or very idea of anyone eating with their mouth open. (What the heck

did they think they'd grown lips for? Rubes.)

My reaction is not " Ooo, what a painful frequency on my abnormally-

sensitive ears! "

It's " What an inconsiderate/stupid/oblivious/rude way to behave. " Or

it's just the sense of being trapped like an animal, with fight-or-

flight instincts racing and nowhere to go.

If you want to simulate these feelings of rage and anxiety, maybe you

won't get it through noises. Try, say, sitting on a plane next to a

smelly fat guy who tells racist jokes and takes up a seat and a half,

including your armrest, for an 8-hour flight. Try studying for a test

with someone blowing smoke in your face. Try to write a letter while

someone repeatedly jabs you in the ribs with a sharp stick. These

things would be exactly as annoying and offensive to me as slack-

jawed food-smacking.

> " Plus, many people who have it find that it is genetic--others in

their families have it. It is not a learned condition. There has to

be a gene that researchers could look for. "

Why do you conclude that a familial trait is genetic and not learned?

Where do you think people learn to be considerate or to be an

obnoxious slob? At home, from the family.

Through two generations of residents, my neighbors' lawn looks like

crap, they play music late and loud, and they leave the dogs outside

barking all night. But if it's genetic, well, I look forward to

researchers identifying the redneck a**hole gene.

(You might guess from the tone of my writing that I'm not doing it

after a walk in the park and a glass of wine; I'm writing from the

office where I'm cornered daily by gum-smackers, chip-chompers, bag-

crinklers, loud-talkers and a guy with tar-breath halitosis so bad it

makes my stomach turn... AUGH! Yes, I'm venting.)

>

> Tube07,

>

> Sadly, most of the people who bother you are probably excessively

rude and

> loud. However, your 4s would still bother you even if everyone was

as

> polite as they can be. My daughter has it, and we eat so painfully

quietly

> in our house. Yet she can still hear and become enraged by the

smallest

> little smack/slurp sound--food makes some sound when being chewed.

She will

> look at the offender like they are the most disgusting food eater

in the

> world and say something like " Didn't you hear that--your going

'slurp, gulp,

> gulp, smack!' " And the rest of us look at her like she's got to be

kidding,

> but we definitely know she's not. Also, we were watching a movie--

at

> home--the other day and she was sitting far across the room. We of

course

> were not eating any popcorn or anything. My other daughter was out

of view

> from Becca (the 4s sufferer) and Becca swings around and asks her

sister

> " What are you doing!? " Well, her sister was just barely scratching

her lip

> with her finger! She could hear this over a movie from across the

room!!!

>

> Don't you get it? It's not the world's problem. Yeah, sure life

would be

> much much easier without gum. But you would still have 4s--It's an

amazing,

> stupid ability to hear these sounds freakishly well. And then on

top of

> that, when you hear these sounds (maybe a certain frequency or

something)

> you have a reflex -like response that causes instant rage/anxiety.

>

> This is definitely something that needs research. You might have a

flaw in

> your auditory/neurological process that can be identified and

treated.

> Hopefully not with medication, but if it works than that could be

good.

>

> I'm sorry your 4s is so bad that you don't realize that those

noises you

> hear are pretty normal. Believe me--I sit with my father-in-law at

dinner

> and just can't believe the sounds he can make while chewing. I

think they

> are so totally gross, but they do not ever evoke feelings of rage

or anxiety

> in me. I have tried to get that feeling--so I can identify with my

> daughter. It doesn't happen.

>

> Plus, when did you get 4s? How old were you? Most people here

were between

> 5-10 years old. This should be a clue for researchers.

>

> Plus, many people who have it find that it is genetic--others in

their

> families have it. It is not a learned condition. There has to be

a gene

> that researchers could look for.

>

> Take care--

>

> Kathy

> Ever think we are *not* the ones with

the

> problem...?

>

> I found this group recently through a fluke mention of SSSS on a

> weblog, and was relieved to learn that I was not alone in being

> disgusted and enraged by other people's offensive habits and lack

of

> courtesy.

>

> But I'm a little disturbed to learn that people are looking at

> undergoing medical studies and taking cocktails of medication to

cope

> with the problem.

>

> What kind of medication do you suppose would help obnoxious,

> oblivious people develop a reasonable sensitivity to gross bodily

> noises and rude behavior?

>

> What kind of clinical study would help office workers realize that

> squishing and popping a wad of gum for 8 hours in a room full of

> people is no more acceptable than playing rap music on a boombox?

>

> I've already quit going to movie theaters because some genius

decided

> loud crunchy junk food was the perfect complement to watching a

film.

> I can at least control my exposure to that. But I can't help that

I

> have to go to work, and I damn well should not be expected to

rewire

> my brain to make the environment tolerable.

>

> I'm also highly irritated by incompetently timid and dangerous

> drivers on the freeway; should I seek medical treatment, or

should we

> educate and train people better before handing them a license?

>

> Public manners do not kick in at the point of your own

sensitivity.

> There is a cultural baseline. Elbows on the dinner table don't

happen

> to bother me, but I know it's not well-regarded so I don't do it.

The

> fact that some people are not bothered by cud-chewing and snot-

> gargling in others doesn't excuse them from monitoring their own

> behavior.

>

> If we have a problem, maybe it's that we are reflexively over-

polite

> and don't know how to confront slovenly pigs without feeling like

> jerks ourselves. Maybe we need to adopt just a bit of their

courtesy-

> blindness and learn to stick up for our own sanity.

>

July 17, 2008

As far as if this is genetic or learned I'm not sure. I could see it

possibly being learned in some situations. My mother raised me to be

very polite with table manners and mouth and nose noises. Don't

smack, chomp your gum, blow your nose in public, etc... It was

basically being polite and respectful of others, not that it was

horrible and disgusting. Those manners are a behavior I did learn

from her. It's possibly genetic since she has 4S as well, yet the

difference is she never showed any disgust at the table as long

people had their mouths shut when eating. She still doesn't. It only

bothers her if they are really loud with mouths hanging open or

talking while chewing etc... However, I am like Kathy's daughter and

even if someone is chewing with their mouth shut across the room, I

get irrate at the sound of the crunching. I know they are not being

rude because their mouth is shut and I know obviously some food makes

noise and I myself make noise when eating things like chips, but it

makes me madder than hell to hear others do it! So where did I learn

that from? Many of the sounds that bug me now developed over the last

few years and they are sounds that don't bother my mom. Why my mom

and I are so different on the scale of intensity I don't know.

My husband on the other hand, was raised by a family of chompers and

he is the only one who chews with his mouth closed. He obviously

didn't learn that one from home! LOL.

-- In Soundsensitivity , " tubes01 " wrote:

>

> Hi Kathy -

>

> I'm sure that, like anything else, there is a scale of intensity,

and

> your daughter is clearly even more sensitive than I am -- as I've

> never wanted to punch someone just for scratching their lip. It's

> possible for me to drown out gross noises out with headphones or

> other ambient sounds - I just resent the hell out of having to do

it.

>

> How long have I been this way? Absolutely as long as I can

remember.

> I must have been taught to eat and behave properly as a very little

> kid, because even in kindergarden I was repulsed at the sound,

sight,

> or very idea of anyone eating with their mouth open. (What the heck

> did they think they'd grown lips for? Rubes.)

>

> My reaction is not " Ooo, what a painful frequency on my abnormally-

> sensitive ears! "

>

> It's " What an inconsiderate/stupid/oblivious/rude way to behave. "

Or

> it's just the sense of being trapped like an animal, with fight-or-

> flight instincts racing and nowhere to go.

>

> If you want to simulate these feelings of rage and anxiety, maybe

you

> won't get it through noises. Try, say, sitting on a plane next to a

> smelly fat guy who tells racist jokes and takes up a seat and a

half,

> including your armrest, for an 8-hour flight. Try studying for a

test

> with someone blowing smoke in your face. Try to write a letter

while

> someone repeatedly jabs you in the ribs with a sharp stick. These

> things would be exactly as annoying and offensive to me as slack-

> jawed food-smacking.

>

> > " Plus, many people who have it find that it is genetic--others in

> their families have it. It is not a learned condition. There has

to

> be a gene that researchers could look for. "

>

> Why do you conclude that a familial trait is genetic and not

learned?

> Where do you think people learn to be considerate or to be an

> obnoxious slob? At home, from the family.

>

> Through two generations of residents, my neighbors' lawn looks like

> crap, they play music late and loud, and they leave the dogs

outside

> barking all night. But if it's genetic, well, I look forward to

> researchers identifying the redneck a**hole gene.

>

> (You might guess from the tone of my writing that I'm not doing it

> after a walk in the park and a glass of wine; I'm writing from the

> office where I'm cornered daily by gum-smackers, chip-chompers, bag-

> crinklers, loud-talkers and a guy with tar-breath halitosis so bad

it

> makes my stomach turn... AUGH! Yes, I'm venting.)

>

> >

> > Tube07,

> >

> > Sadly, most of the people who bother you are probably excessively

> rude and

> > loud. However, your 4s would still bother you even if everyone

was

> as

> > polite as they can be. My daughter has it, and we eat so

painfully

> quietly

> > in our house. Yet she can still hear and become enraged by the

> smallest

> > little smack/slurp sound--food makes some sound when being

chewed.

> She will

> > look at the offender like they are the most disgusting food eater

> in the

> > world and say something like " Didn't you hear that--your going

> 'slurp, gulp,

> > gulp, smack!' " And the rest of us look at her like she's got to

be

> kidding,

> > but we definitely know she's not. Also, we were watching a movie-

-

> at

> > home--the other day and she was sitting far across the room. We

of

> course

> > were not eating any popcorn or anything. My other daughter was

out

> of view

> > from Becca (the 4s sufferer) and Becca swings around and asks her

> sister

> > " What are you doing!? " Well, her sister was just barely

scratching

> her lip

> > with her finger! She could hear this over a movie from across

the

> room!!!

> >

> > Don't you get it? It's not the world's problem. Yeah, sure life

> would be

> > much much easier without gum. But you would still have 4s--It's

an

> amazing,

> > stupid ability to hear these sounds freakishly well. And then on

> top of

> > that, when you hear these sounds (maybe a certain frequency or

> something)

> > you have a reflex -like response that causes instant rage/anxiety.

> >

> > This is definitely something that needs research. You might have

a

> flaw in

> > your auditory/neurological process that can be identified and

> treated.

> > Hopefully not with medication, but if it works than that could be

> good.

> >

> > I'm sorry your 4s is so bad that you don't realize that those

> noises you

> > hear are pretty normal. Believe me--I sit with my father-in-law

at

> dinner

> > and just can't believe the sounds he can make while chewing. I

> think they

> > are so totally gross, but they do not ever evoke feelings of rage

> or anxiety

> > in me. I have tried to get that feeling--so I can identify with

my

> > daughter. It doesn't happen.

> >

> > Plus, when did you get 4s? How old were you? Most people here

> were between

> > 5-10 years old. This should be a clue for researchers.

> >

> > Plus, many people who have it find that it is genetic--others in

> their

> > families have it. It is not a learned condition. There has to

be

> a gene

> > that researchers could look for.

> >

> > Take care--

> >

> > Kathy

> > Ever think we are *not* the ones

with

> the

> > problem...?

> >

> > I found this group recently through a fluke mention of SSSS on a

> > weblog, and was relieved to learn that I was not alone in being

> > disgusted and enraged by other people's offensive habits and

lack

> of

> > courtesy.

> >

> > But I'm a little disturbed to learn that people are looking at

> > undergoing medical studies and taking cocktails of medication

to

> cope

> > with the problem.

> >

> > What kind of medication do you suppose would help obnoxious,

> > oblivious people develop a reasonable sensitivity to gross

bodily

> > noises and rude behavior?

> >

> > What kind of clinical study would help office workers realize

that

> > squishing and popping a wad of gum for 8 hours in a room full of

> > people is no more acceptable than playing rap music on a

boombox?

> >

> > I've already quit going to movie theaters because some genius

> decided

> > loud crunchy junk food was the perfect complement to watching a

> film.

> > I can at least control my exposure to that. But I can't help

that

> I

> > have to go to work, and I damn well should not be expected to

> rewire

> > my brain to make the environment tolerable.

> >

> > I'm also highly irritated by incompetently timid and dangerous

> > drivers on the freeway; should I seek medical treatment, or

> should we

> > educate and train people better before handing them a license?

> >

> > Public manners do not kick in at the point of your own

> sensitivity.

> > There is a cultural baseline. Elbows on the dinner table don't

> happen

> > to bother me, but I know it's not well-regarded so I don't do

it.

> The

> > fact that some people are not bothered by cud-chewing and snot-

> > gargling in others doesn't excuse them from monitoring their own

> > behavior.

> >

> > If we have a problem, maybe it's that we are reflexively over-

> polite

> > and don't know how to confront slovenly pigs without feeling

like

> > jerks ourselves. Maybe we need to adopt just a bit of their

> courtesy-

> > blindness and learn to stick up for our own sanity.

> >

>

July 18, 2008

oh no - it is certainly ME with the problem

and i think we do damage to raising awareness and understanding of our problem

when

we place too much emphasis on the actions of people who trigger our

reaction.....that only

makes people defensive (quite rightly, what right do we have to dictate how

people

should eat and what noises they should make? ) and it makes ourselves sound

more

intolerant than suffering from a genuine medical problem.

oh yes i wish the world was different and we all had great table manners, didn`t

eat gum

or crisps, or rattle plastic and on and on and on it goes...... but even then i

don`t think

this problem would disappear .....well mine wouldn`t ...hence the soft sound

part of 4S

my latest trigger is my husband brushing his teeth.... poor him, he does his

best

.............. but that doesn`t stop me from sometimes being an unreasonable,

horrible

dragon when the anger has it`s grip and my earplugs can`t be found

it certainly is MY problem

fiona

> > >

> > > Tube07,

> > >

> > > Sadly, most of the people who bother you are probably excessively

> > rude and

> > > loud. However, your 4s would still bother you even if everyone

> was

> > as

> > > polite as they can be. My daughter has it, and we eat so

> painfully

> > quietly

> > > in our house. Yet she can still hear and become enraged by the

> > smallest

> > > little smack/slurp sound--food makes some sound when being

> chewed.

> > She will

> > > look at the offender like they are the most disgusting food eater

> > in the

> > > world and say something like " Didn't you hear that--your going

> > 'slurp, gulp,

> > > gulp, smack!' " And the rest of us look at her like she's got to

> be

> > kidding,

> > > but we definitely know she's not. Also, we were watching a movie-

> -

> > at

> > > home--the other day and she was sitting far across the room. We

> of

> > course

> > > were not eating any popcorn or anything. My other daughter was

> out

> > of view

> > > from Becca (the 4s sufferer) and Becca swings around and asks her

> > sister

> > > " What are you doing!? " Well, her sister was just barely

> scratching

> > her lip

> > > with her finger! She could hear this over a movie from across

> the

> > room!!!

> > >

> > > Don't you get it? It's not the world's problem. Yeah, sure life

> > would be

> > > much much easier without gum. But you would still have 4s--It's

> an

> > amazing,

> > > stupid ability to hear these sounds freakishly well. And then on

> > top of

> > > that, when you hear these sounds (maybe a certain frequency or

> > something)

> > > you have a reflex -like response that causes instant rage/anxiety.

> > >

> > > This is definitely something that needs research. You might have

> a

> > flaw in

> > > your auditory/neurological process that can be identified and

> > treated.

> > > Hopefully not with medication, but if it works than that could be

> > good.

> > >

> > > I'm sorry your 4s is so bad that you don't realize that those

> > noises you

> > > hear are pretty normal. Believe me--I sit with my father-in-law

> at

> > dinner

> > > and just can't believe the sounds he can make while chewing. I

> > think they

> > > are so totally gross, but they do not ever evoke feelings of rage

> > or anxiety

> > > in me. I have tried to get that feeling--so I can identify with

> my

> > > daughter. It doesn't happen.

> > >

> > > Plus, when did you get 4s? How old were you? Most people here

> > were between

> > > 5-10 years old. This should be a clue for researchers.

> > >

> > > Plus, many people who have it find that it is genetic--others in

> > their

> > > families have it. It is not a learned condition. There has to

> be

> > a gene

> > > that researchers could look for.

> > >

> > > Take care--

> > >

> > > Kathy

> > > Ever think we are *not* the ones

> with

> > the

> > > problem...?

> > >

> > > I found this group recently through a fluke mention of SSSS on a

> > > weblog, and was relieved to learn that I was not alone in being

> > > disgusted and enraged by other people's offensive habits and

> lack

> > of

> > > courtesy.

> > >

> > > But I'm a little disturbed to learn that people are looking at

> > > undergoing medical studies and taking cocktails of medication

> to

> > cope

> > > with the problem.

> > >

> > > What kind of medication do you suppose would help obnoxious,

> > > oblivious people develop a reasonable sensitivity to gross

> bodily

> > > noises and rude behavior?

> > >

> > > What kind of clinical study would help office workers realize

> that

> > > squishing and popping a wad of gum for 8 hours in a room full of

> > > people is no more acceptable than playing rap music on a

> boombox?

> > >

> > > I've already quit going to movie theaters because some genius

> > decided

> > > loud crunchy junk food was the perfect complement to watching a

> > film.

> > > I can at least control my exposure to that. But I can't help

> that

> > I

> > > have to go to work, and I damn well should not be expected to

> > rewire

> > > my brain to make the environment tolerable.

> > >

> > > I'm also highly irritated by incompetently timid and dangerous

> > > drivers on the freeway; should I seek medical treatment, or

> > should we

> > > educate and train people better before handing them a license?

> > >

> > > Public manners do not kick in at the point of your own

> > sensitivity.

> > > There is a cultural baseline. Elbows on the dinner table don't

> > happen

> > > to bother me, but I know it's not well-regarded so I don't do

> it.

> > The

> > > fact that some people are not bothered by cud-chewing and snot-

> > > gargling in others doesn't excuse them from monitoring their own

> > > behavior.

> > >

> > > If we have a problem, maybe it's that we are reflexively over-

> > polite

> > > and don't know how to confront slovenly pigs without feeling

> like

> > > jerks ourselves. Maybe we need to adopt just a bit of their

> > courtesy-

> > > blindness and learn to stick up for our own sanity.

> > >

> >

>

July 18, 2008

I'm sorry you don't realize that what you have is not a learned response. I never told my children to eat quietly or suggested correct manners. She did not learn it from anything environmental. Plus many on this site found out later that a grandparent also suffers/suffered from int and they didn't learn it from them--they didn't even realize their grandparent had it until later. It definitely seems to be genetic.

Also, I didn't say the frequency hurt my daughter's ears. It causes a reflex-like extremely uncomfortable anxiety/rage causing response that she says is uncontrollable. That is what we are trying to get research for. How a noise can cause this instantaneous reaction!

What is sad is that people like you think it is a learned/psychological problem--which apparently could be unlearned with cognitive behavioral therapy--of which many on this group has tried with not one little bit of success.

This is not PSYCHOLOGICAL!! It is a NEUROLOGICAL malfunction---we need research!!

Plus, there is nothing anyone could do (without touching me) that would cause me to have the reaction that 4s sufferers have.

But you can believe what you want--I just think that you just confirm all the doctor's beliefs that we just need to "learn" to get over it and this will just let the suffering continue through generation after generation.

Kathy

Ever think we are *not* the ones with the> problem...?> > > I found this group recently through a fluke mention of SSSS on a> weblog, and was relieved to learn that I was not alone in being> disgusted and enraged by other people's offensive habits and lack of> courtesy.> > But I'm a little disturbed to learn that people are looking at> undergoing medical studies and taking cocktails of medication to cope> with the problem.> > What kind of medication do you suppose would help obnoxious,> oblivious people develop a reasonable sensitivity to gross bodily> noises and rude behavior?> > What kind of clinical study would help office workers realize that> squishing and popping a wad of gum for 8 hours in a room full of> people is no more acceptable than playing rap music on a boombox?> > I've already quit going to movie theaters because some genius decided> loud crunchy junk food was the perfect complement to watching a film.> I can at least control my exposure to that. But I can't help that I> have to go to work, and I damn well should not be expected to rewire> my brain to make the environment tolerable.> > I'm also highly irritated by incompetently timid and dangerous> drivers on the freeway; should I seek medical treatment, or should we> educate and train people better before handing them a license?> > Public manners do not kick in at the point of your own sensitivity.> There is a cultural baseline. Elbows on the dinner table don't happen> to bother me, but I know it's not well-regarded so I don't do it. The> fact that some people are not bothered by cud-chewing and snot-> gargling in others doesn't excuse them from monitoring their own> behavior.> > If we have a problem, maybe it's that we are reflexively over-polite> and don't know how to confront slovenly pigs without feeling like> jerks ourselves. Maybe we need to adopt just a bit of their courtesy-> blindness and learn to stick up for our own sanity.>

July 18, 2008

I haven't responded to these posts in awhile, quite awhile. But I just wanted to add that physical symptoms definetely can happen! Noises have always bothered me, especially soft sounds. I obtained a rare nerve condition years and years ago. Since then the noises aren't just bothersome for me, but make my nerve condition hurt when I'm around them. I then get angry, have outbursts, you name it. And that is embarressing in themselves since a lot of people don't understand. I've actually ordered the 3000 ear things they sell for people like us, but they don't work that often, especially if someone is chewing gum next to me. So I just carry earplugs EVERYWHERE I go, and they work really good at even keeping close range soft sounds at bay. Especially when I'm at appts and everyone is chewing on something. If I didn't have my earplugs, I would probably go postal - just an expression, but still.

Sorry dude, it is US that has a problem, not the rest of the world. Maybe u don't truly have it as bad as some with SSSS, but most of us get physical symptoms such as nausea when we hear these noises - EVEN

WHEN POLITE PEOPLE CHEW WITH THEIR MOUTHS CLOSED! Many of us are highly and very bizarrely tuned in to notice things like the swishing of the wet food inside a closed mouth Even the politest, best mannered person pops open a stick of gum and chews it quietly, this

might trigger us as we know that gum COULD be noisy. We can't change the rest of the world, only how we react to it. SMost of us can't control that awful way our bodies and minds react to the noises, even

the polite ones.>> I found this group recently through a fluke mention of SSSS on a

> weblog, and was relieved to learn that I was not alone in being > disgusted and enraged by other people's offensive habits and lack of > courtesy.> > But I'm a little disturbed to learn that people are looking at

> undergoing medical studies and taking cocktails of medication to cope > with the problem.> > What kind of medication do you suppose would help obnoxious, > oblivious people develop a reasonable sensitivity to gross bodily

> noises and rude behavior? > > What kind of clinical study would help office workers realize that > squishing and popping a wad of gum for 8 hours in a room full of > people is no more acceptable than playing rap music on a boombox?

> > I've already quit going to movie theaters because some genius decided > loud crunchy junk food was the perfect complement to watching a film. > I can at least control my exposure to that. But I can't help that I

> have to go to work, and I damn well should not be expected to rewire > my brain to make the environment tolerable. > > I'm also highly irritated by incompetently timid and dangerous > drivers on the freeway; should I seek medical treatment, or should

we > educate and train people better before handing them a license?> > Public manners do not kick in at the point of your own sensitivity. > There is a cultural baseline. Elbows on the dinner table don't

happen > to bother me, but I know it's not well-regarded so I don't do it. The > fact that some people are not bothered by cud-chewing and snot-> gargling in others doesn't excuse them from monitoring their own

> behavior.> > If we have a problem, maybe it's that we are reflexively over-polite > and don't know how to confront slovenly pigs without feeling like > jerks ourselves. Maybe we need to adopt just a bit of their

courtesy-> blindness and learn to stick up for our own sanity.>

July 18, 2008

What kind of nerve condition did you get and how were you diagnosed?

And yes--many people on this site do have physical symptoms like electrical shocks to certain parts of their bodies when they hear the trigger sounds. I think that could be a clue to look at if we get research.

Just curious--

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of TamboliSent: Friday, July 18, 2008 10:13 AMTo: Soundsensitivity Subject: Re: Re: Ever think we are *not* the ones with the problem...?

I haven't responded to these posts in awhile, quite awhile. But I just wanted to add that physical symptoms definetely can happen! Noises have always bothered me, especially soft sounds. I obtained a rare nerve condition years and years ago. Since then the noises aren't just bothersome for me, but make my nerve condition hurt when I'm around them. I then get angry, have outbursts, you name it. And that is embarressing in themselves since a lot of people don't understand. I've actually ordered the 3000 ear things they sell for people like us, but they don't work that often, especially if someone is chewing gum next to me. So I just carry earplugs EVERYWHERE I go, and they work really good at even keeping close range soft sounds at bay. Especially when I'm at appts and everyone is chewing on something. If I didn't have my earplugs, I would probably go postal - just an expression, but still.

July 18, 2008

Kathy you hit the nail on the head.

It is the RAGE & ANXIETY that is difficult to deal with. Trying to keep

those under control 24/7 is a frustrating (more than a) full time job.

That is what exhausts me the most about having this condition.

My blood pressure rises, my nerves fray, and I'm constantly on edge.

Being like that every day all day long is not healthy. There is only so

much a person can handle. This is why I can't have too much going on in

my life. I get so overwhelmed that I have no time to come down and be in

an environment where I can truly relax and recover.

I can only begin to tell you how many times I've reached that place and

was unable to follow through with everything going on in my life. It can

become very depressing with a feeling of hopelessness and worthlessness.

This is why a good family connection of understanding about having this

condition is so important for us who suffer. Without that foundation our

society can be one hell of a scary and painful place to live. I speak

from experience.

Your daughter is so lucky to have that foundation with you and your

family. I do now, but not when I was a kid. It would have made a big

difference in my life.

-Randall

Kathy Howe wrote:

>

> Tube07,

>

> Sadly, most of the people who bother you _/are/_ probably excessively

> rude and loud. However, your 4s would still bother you even if everyone

> was as polite as they can be. My daughter has it, and we eat so

> painfully quietly in our house. Yet she can still hear and become

> enraged by the smallest little smack/slurp sound--food makes some sound

> when being chewed. She will look at the offender like they are the most

> disgusting food eater in the world and say something like " Didn't you

> hear that--your going 'slurp, gulp, gulp, smack!' " And the rest of us

> look at her like she's got to be kidding, but we definitely know she's

> not. Also, we were watching a movie--at home--the other day and she was

> sitting far across the room. We of course were not eating any popcorn

> or anything. My other daughter was out of view from Becca (the 4s

> sufferer) and Becca swings around and asks her sister " What are you

> doing!? " Well, her sister was just barely scratching her lip with her

> finger! She could hear this over a movie from across the room!!!

>

> Don't you get it? It's not the world's problem. Yeah, sure life would

> be much much easier without gum. But you would still have 4s--It's an

> amazing, stupid ability to hear these sounds freakishly well. And then

> on top of that, when you hear these sounds (maybe a certain frequency or

> something) you have a reflex -like response that causes instant

> rage/anxiety.

>

> This is definitely something that needs research. You might have a flaw

> in your auditory/neurological process that can be identified and

> treated. Hopefully not with medication, but if it works than that could

> be good.

>

> I'm sorry your 4s is so bad that you don't realize that those noises you

> hear are pretty normal. Believe me--I sit with my father-in-law at

> dinner and just can't believe the sounds he can make while chewing. I

> think they are so totally gross, but they do not ever evoke feelings of

> rage or anxiety in me. I have tried to get that feeling--so I can

> identify with my daughter. It doesn't happen.

>

> Plus, when did you get 4s? How old were you? Most people here were

> between 5-10 years old. This should be a clue for researchers.

>

> Plus, many people who have it find that it is genetic--others in their

> families have it. It is not a learned condition. There has to be a

> gene that researchers could look for.

>

> Take care--

>

> Kathy

>

> * Ever think we are *not* the ones with

> the problem...?

>

> I found this group recently through a fluke mention of SSSS on a

> weblog, and was relieved to learn that I was not alone in being

> disgusted and enraged by other people's offensive habits and lack of

> courtesy.

>

> But I'm a little disturbed to learn that people are looking at

> undergoing medical studies and taking cocktails of medication to cope

> with the problem.

>

> What kind of medication do you suppose would help obnoxious,

> oblivious people develop a reasonable sensitivity to gross bodily

> noises and rude behavior?

>

> What kind of clinical study would help office workers realize that

> squishing and popping a wad of gum for 8 hours in a room full of

> people is no more acceptable than playing rap music on a boombox?

>

> I've already quit going to movie theaters because some genius decided

> loud crunchy junk food was the perfect complement to watching a film.

> I can at least control my exposure to that. But I can't help that I

> have to go to work, and I damn well should not be expected to rewire

> my brain to make the environment tolerable.

>

> I'm also highly irritated by incompetently timid and dangerous

> drivers on the freeway; should I seek medical treatment, or should we

> educate and train people better before handing them a license?

>

> Public manners do not kick in at the point of your own sensitivity.

> There is a cultural baseline. Elbows on the dinner table don't happen

> to bother me, but I know it's not well-regarded so I don't do it. The

> fact that some people are not bothered by cud-chewing and snot-

> gargling in others doesn't excuse them from monitoring their own

> behavior.

>

> If we have a problem, maybe it's that we are reflexively over-polite

> and don't know how to confront slovenly pigs without feeling like

> jerks ourselves. Maybe we need to adopt just a bit of their courtesy-

> blindness and learn to stick up for our own sanity.

>

July 18, 2008

I hate having to wear headphones all the time. Around the house or when

I venture into the city. I resent that society can't be a more welcoming

place to my ears.

tubes01 wrote:

>

> Hi Kathy -

>

> I'm sure that, like anything else, there is a scale of intensity, and

> your daughter is clearly even more sensitive than I am -- as I've

> never wanted to punch someone just for scratching their lip. It's

> possible for me to drown out gross noises out with headphones or

> other ambient sounds - I just resent the hell out of having to do it.

>

> How long have I been this way? Absolutely as long as I can remember.

> I must have been taught to eat and behave properly as a very little

> kid, because even in kindergarden I was repulsed at the sound, sight,

> or very idea of anyone eating with their mouth open. (What the heck

> did they think they'd grown lips for? Rubes.)

>

> My reaction is not " Ooo, what a painful frequency on my abnormally-

> sensitive ears! "

>

> It's " What an inconsiderate/stupid/oblivious/rude way to behave. " Or

> it's just the sense of being trapped like an animal, with fight-or-

> flight instincts racing and nowhere to go.

>

> If you want to simulate these feelings of rage and anxiety, maybe you

> won't get it through noises. Try, say, sitting on a plane next to a

> smelly fat guy who tells racist jokes and takes up a seat and a half,

> including your armrest, for an 8-hour flight. Try studying for a test

> with someone blowing smoke in your face. Try to write a letter while

> someone repeatedly jabs you in the ribs with a sharp stick. These

> things would be exactly as annoying and offensive to me as slack-

> jawed food-smacking.

>

> > " Plus, many people who have it find that it is genetic--others in

> their families have it. It is not a learned condition. There has to

> be a gene that researchers could look for. "

>

> Why do you conclude that a familial trait is genetic and not learned?

> Where do you think people learn to be considerate or to be an

> obnoxious slob? At home, from the family.

>

> Through two generations of residents, my neighbors' lawn looks like

> crap, they play music late and loud, and they leave the dogs outside

> barking all night. But if it's genetic, well, I look forward to

> researchers identifying the redneck a**hole gene.

>

> (You might guess from the tone of my writing that I'm not doing it

> after a walk in the park and a glass of wine; I'm writing from the

> office where I'm cornered daily by gum-smackers, chip-chompers, bag-

> crinklers, loud-talkers and a guy with tar-breath halitosis so bad it

> makes my stomach turn... AUGH! Yes, I'm venting.)

>

> >

> > Tube07,

> >

> > Sadly, most of the people who bother you are probably excessively

> rude and

> > loud. However, your 4s would still bother you even if everyone was

> as

> > polite as they can be. My daughter has it, and we eat so painfully

> quietly

> > in our house. Yet she can still hear and become enraged by the

> smallest

> > little smack/slurp sound--food makes some sound when being chewed.

> She will

> > look at the offender like they are the most disgusting food eater

> in the

> > world and say something like " Didn't you hear that--your going

> 'slurp, gulp,

> > gulp, smack!' " And the rest of us look at her like she's got to be

> kidding,

> > but we definitely know she's not. Also, we were watching a movie--

> at

> > home--the other day and she was sitting far across the room. We of

> course

> > were not eating any popcorn or anything. My other daughter was out

> of view

> > from Becca (the 4s sufferer) and Becca swings around and asks her

> sister

> > " What are you doing!? " Well, her sister was just barely scratching

> her lip

> > with her finger! She could hear this over a movie from across the

> room!!!

> >

> > Don't you get it? It's not the world's problem. Yeah, sure life

> would be

> > much much easier without gum. But you would still have 4s--It's an

> amazing,

> > stupid ability to hear these sounds freakishly well. And then on

> top of

> > that, when you hear these sounds (maybe a certain frequency or

> something)

> > you have a reflex -like response that causes instant rage/anxiety.

> >

> > This is definitely something that needs research. You might have a

> flaw in

> > your auditory/neurological process that can be identified and

> treated.

> > Hopefully not with medication, but if it works than that could be

> good.

> >

> > I'm sorry your 4s is so bad that you don't realize that those

> noises you

> > hear are pretty normal. Believe me--I sit with my father-in-law at

> dinner

> > and just can't believe the sounds he can make while chewing. I

> think they

> > are so totally gross, but they do not ever evoke feelings of rage

> or anxiety

> > in me. I have tried to get that feeling--so I can identify with my

> > daughter. It doesn't happen.

> >

> > Plus, when did you get 4s? How old were you? Most people here

> were between

> > 5-10 years old. This should be a clue for researchers.

> >

> > Plus, many people who have it find that it is genetic--others in

> their

> > families have it. It is not a learned condition. There has to be

> a gene

> > that researchers could look for.

> >

> > Take care--

> >

> > Kathy

> > Ever think we are *not* the ones with

> the

> > problem...?

> >

> > I found this group recently through a fluke mention of SSSS on a

> > weblog, and was relieved to learn that I was not alone in being

> > disgusted and enraged by other people's offensive habits and lack

> of

> > courtesy.

> >

> > But I'm a little disturbed to learn that people are looking at

> > undergoing medical studies and taking cocktails of medication to

> cope

> > with the problem.

> >

> > What kind of medication do you suppose would help obnoxious,

> > oblivious people develop a reasonable sensitivity to gross bodily

> > noises and rude behavior?

> >

> > What kind of clinical study would help office workers realize that

> > squishing and popping a wad of gum for 8 hours in a room full of

> > people is no more acceptable than playing rap music on a boombox?

> >

> > I've already quit going to movie theaters because some genius

> decided

> > loud crunchy junk food was the perfect complement to watching a

> film.

> > I can at least control my exposure to that. But I can't help that

> I

> > have to go to work, and I damn well should not be expected to

> rewire

> > my brain to make the environment tolerable.

> >

> > I'm also highly irritated by incompetently timid and dangerous

> > drivers on the freeway; should I seek medical treatment, or

> should we

> > educate and train people better before handing them a license?

> >

> > Public manners do not kick in at the point of your own

> sensitivity.

> > There is a cultural baseline. Elbows on the dinner table don't

> happen

> > to bother me, but I know it's not well-regarded so I don't do it.

> The

> > fact that some people are not bothered by cud-chewing and snot-

> > gargling in others doesn't excuse them from monitoring their own

> > behavior.

> >

> > If we have a problem, maybe it's that we are reflexively over-

> polite

> > and don't know how to confront slovenly pigs without feeling like

> > jerks ourselves. Maybe we need to adopt just a bit of their

> courtesy-

> > blindness and learn to stick up for our own sanity.

> >

>

July 18, 2008

I have to agree. It is totally me, not others.

My condition began at about age 8-10. My family, especially my Dad,

made noises while eating. It was not concidered bad manners, it was

just normal eating. I was the only one to notice, so I always took

my food into the living room to eat. I could not stand to eat at the

table.

After I married and had my three sons, I did teach all of them the

proper way of eating, but I never was able to sit at the table and

eat meals with my ex husband and boys. We all took our food to the

living room, computer room or den to eat. The only time we ever ate

at the table was during Thanksgiving and Christmas, and then I kept

so busy waiting on everyone, I never sat down to join everyone while

they ate. My middle son also has this condition. His triggers are

chewing sounds and nail clipping. Typing does not bother him. Is it

because of genetics or environment??? I don't know. I ALWAYS over

stressed good manners.

Also, though all these eating noises torture me, my worst trigger is

to hear someone typing on a keyboard or clicking on the mouse. I

work in a cubicle world, where there are 90 cubes in my section of

the floor. These people are not being rude for typing and doing

their job, but I feel the fight or flight when I hear them type. I

keep headphones on 8 hours a day, and if someone comes by to talk to

me, all I hear is the typing and wish they would just leave me

alone. I really do like to socialize, but not at the risk of these

noises. I was off work for 6 months, about a year ago, because of

this condition.

Noises that bother me are never even noticed by others around me.

Sometimes they have to listen very carefully, to even hear what I

hear.

No, typing is not rude or obnoxious, neither is someone moving thier

foot or hands continuously, or chewing with their mouth closed, but

they are pure torture to me.

>

> oh no - it is certainly ME with the problem

>

> and i think we do damage to raising awareness and understanding of

our problem when

> we place too much emphasis on the actions of people who trigger our

reaction.....that only

> makes people defensive (quite rightly, what right do we have to

dictate how people

> should eat and what noises they should make? ) and it makes

ourselves sound more

> intolerant than suffering from a genuine medical problem.

>

> oh yes i wish the world was different and we all had great table

manners, didn`t eat gum

> or crisps, or rattle plastic and on and on and on it goes......

but even then i don`t think

> this problem would disappear .....well mine wouldn`t ...hence the

soft sound part of 4S

>

> my latest trigger is my husband brushing his teeth.... poor him, he

does his best

>

> ............. but that doesn`t stop me from sometimes being an

unreasonable, horrible

> dragon when the anger has it`s grip and my earplugs can`t be found

>

> it certainly is MY problem

> fiona

>

July 18, 2008

I've tried to unlearn this since sounds started to become an issue for

me when I was a kid. I have not succeeded yet and I'm 31.

The only thing I can do is drown out trigger sounds with headphones.

Makes conversing with others difficult. So I don't really see that as a

solution, just a band-aid that hurts when you rip it off and find the

wound still hasn't healed yet.

I think it is more genetic than a learned behavior too.

Kathy Howe wrote:

>

> I'm sorry you don't realize that what you have is not a _learned_

> response. I never told my children to eat quietly or suggested correct

> manners. She did not learn it from anything environmental. Plus many

> on this site found out later that a grandparent also suffers/suffered

> from int and they didn't learn it from them--they didn't even realize

> their grandparent had it until later. It definitely seems to be genetic.

>

> Also, I didn't say the frequency hurt my daughter's ears. It causes a

> reflex-like extremely uncomfortable anxiety/rage causing response that

> she says is uncontrollable. That is what we are trying to get research

> for. How a noise can cause this instantaneous reaction!

>

> What is sad is that people like you think it is a learned/psychological

> problem--which apparently could be unlearned with cognitive behavioral

> therapy--of which many on this group has tried with not one little bit

> of success.

>

> This is not PSYCHOLOGICAL!! It is a NEUROLOGICAL malfunction---we need

> research!!

>

> Plus, there is nothing anyone could do (without touching me) that would

> cause me to have the reaction that 4s sufferers have.

>

> But you can believe what you want--I just think that you just confirm

> all the doctor's beliefs that we just need to " learn " to get over it and

> this will just let the suffering continue through generation after

> generation.

>

> Kathy

>

> Ever think we are *not* the ones with

> the

> > problem...?

> >

> > I found this group recently through a fluke mention of SSSS on a

> > weblog, and was relieved to learn that I was not alone in being

> > disgusted and enraged by other people's offensive habits and lack

> of

> > courtesy.

> >

> > But I'm a little disturbed to learn that people are looking at

> > undergoing medical studies and taking cocktails of medication to

> cope

> > with the problem.

> >

> > What kind of medication do you suppose would help obnoxious,

> > oblivious people develop a reasonable sensitivity to gross bodily

> > noises and rude behavior?

> >

> > What kind of clinical study would help office workers realize that

> > squishing and popping a wad of gum for 8 hours in a room full of

> > people is no more acceptable than playing rap music on a boombox?

> >

> > I've already quit going to movie theaters because some genius

> decided

> > loud crunchy junk food was the perfect complement to watching a

> film.

> > I can at least control my exposure to that. But I can't help that

> I

> > have to go to work, and I damn well should not be expected to

> rewire

> > my brain to make the environment tolerable.

> >

> > I'm also highly irritated by incompetently timid and dangerous

> > drivers on the freeway; should I seek medical treatment, or

> should we

> > educate and train people better before handing them a license?

> >

> > Public manners do not kick in at the point of your own

> sensitivity.

> > There is a cultural baseline. Elbows on the dinner table don't

> happen

> > to bother me, but I know it's not well-regarded so I don't do it.

> The

> > fact that some people are not bothered by cud-chewing and snot-

> > gargling in others doesn't excuse them from monitoring their own

> > behavior.

> >

> > If we have a problem, maybe it's that we are reflexively over-

> polite

> > and don't know how to confront slovenly pigs without feeling like

> > jerks ourselves. Maybe we need to adopt just a bit of their

> courtesy-

> > blindness and learn to stick up for our own sanity.

> >

>

July 18, 2008

"Or it's just the sense of being trapped like an animal, with fight-or-flight instincts racing and nowhere to go."

Exactly--my 4s reaction is SO much worse if I know I'm stuck somewhere.

"Why do you conclude that a familial trait is genetic and not learned? Where do you think people learn to be considerate or to be an obnoxious slob? At home, from the family."

I recently learned that my uncle, who died when I was 13, had 4s, and I had no idea before. This doesn't prove a genetic link, of course, but I certainly didn't learn it from him, or from anyone else in my family, since we were the only lucky two (I'm pretty sure.) There's been no research, only stories shared by the group, but there does seem to be a genetic factor involved.

I think you have a point about it not being totally our problem. Manners have gone downhill fast in the past couple of generations. But I'm annoyed by so many things that aren't manners-related: traffic, barking dogs (although good mannered-owners should keep their dogs happy), anything repetitive like clicking or popping. Even if these sounds are made by machines, they bug me. And we can't deny that most people just don't care about these little noises. Even if they're a bit annoyed, they don't have the extreme reaction--so basically the problem is ours, unfortunately.

July 18, 2008

Randall,

I am sitting here reading your note, with tears in my eyes. It IS so

exhausting, being on guard 24/7. At the end of a workday, I am so

tired. The only time I have peace from 4S is when I am alone, but I

hate being alone. It IS so depressing, and I guess I am just having

one of those days, where I just want to cry thinking about it.

>

> Kathy you hit the nail on the head.

>

> It is the RAGE & ANXIETY that is difficult to deal with. Trying to

keep

> those under control 24/7 is a frustrating (more than a) full time

job.

> That is what exhausts me the most about having this condition.

>

> My blood pressure rises, my nerves fray, and I'm constantly on edge.

>

> Being like that every day all day long is not healthy. There is

only so

> much a person can handle. This is why I can't have too much going

on in

> my life. I get so overwhelmed that I have no time to come down and

be in

> an environment where I can truly relax and recover.

>

> I can only begin to tell you how many times I've reached that place

and

> was unable to follow through with everything going on in my life.

It can

> become very depressing with a feeling of hopelessness and

worthlessness.

>

> This is why a good family connection of understanding about having

this

> condition is so important for us who suffer. Without that

foundation our

> society can be one hell of a scary and painful place to live. I

speak

> from experience.

>

> Your daughter is so lucky to have that foundation with you and your

> family. I do now, but not when I was a kid. It would have made a

big

> difference in my life.

>

> -Randall

>

July 18, 2008

Another case for the genetic factor:

There was someone early on--a couple of years ago--on this site who said that he and all his siblings had this condition. I guess you could argue that they all "learned" it from something in their evironment, but I would say that both his parents probably had the dominant gene for 4s and therefore all their kids--I think it was 5 or 6 kids--got it. They would be a great case to study!

Also, there are a couple of sets of identical twins on this site who both have it. Once again, you could argue that they had the same environmental exposures, but I would argue that they have the exact same genes. Another great case to study!

Oh what I would do to have a lot of resources to be able to study this crazy condition in a laboratory instead of just on this website!! I would do MRIs, CTs, anything I could to see what could be causing this. I think it would be fascinating to do an MRI or CT while the person is exposed to gum chewing. And especially gum chewing from their worst trigger person!

Oh well--just a fantasy.

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of HardenberghSent: Friday, July 18, 2008 11:18 AMTo: Soundsensitivity Subject: Re: Ever think we are *not* the ones with the problem...?

"Or it's just the sense of being trapped like an animal, with fight-or-flight instincts racing and nowhere to go."

Exactly--my 4s reaction is SO much worse if I know I'm stuck somewhere.

"Why do you conclude that a familial trait is genetic and not learned? Where do you think people learn to be considerate or to be an obnoxious slob? At home, from the family."

I recently learned that my uncle, who died when I was 13, had 4s, and I had no idea before. This doesn't prove a genetic link, of course, but I certainly didn't learn it from him, or from anyone else in my family, since we were the only lucky two (I'm pretty sure.) There's been no research, only stories shared by the group, but there does seem to be a genetic factor involved.

I think you have a point about it not being totally our problem. Manners have gone downhill fast in the past couple of generations. But I'm annoyed by so many things that aren't manners-related: traffic, barking dogs (although good mannered-owners should keep their dogs happy), anything repetitive like clicking or popping. Even if these sounds are made by machines, they bug me. And we can't deny that most people just don't care about these little noises. Even if they're a bit annoyed, they don't have the extreme reaction--so basically the problem is ours, unfortunately.

July 18, 2008

It makes me cry too. I never expected to feel a kinship with anyone

about this condition. I thought I was alone for so long. With this group

I don't feel like this kind of sensitivity is all my fault anymore.

Being alone IS depressing. I am used to it more now, because it is the

only way to keep me from being constantly on the edge. Having a

relationship is difficult when dealing with this condition.

I feel very fortunate right now in my life that I'm not so overwhelmed

as I ended up being a year and a half ago. My parents are here for me

right now and I thank God for them. After all these years, they now

understand what I go through.

Thank you for being here and writing back to me. I wish I could give you

a hug right now. Take care.

-Randall

tmpendleton_1 wrote:

>

> Randall,

>

> I am sitting here reading your note, with tears in my eyes. It IS so

> exhausting, being on guard 24/7. At the end of a workday, I am so

> tired. The only time I have peace from 4S is when I am alone, but I

> hate being alone. It IS so depressing, and I guess I am just having

> one of those days, where I just want to cry thinking about it.

>

> >

> > Kathy you hit the nail on the head.

> >

> > It is the RAGE & ANXIETY that is difficult to deal with. Trying to

> keep

> > those under control 24/7 is a frustrating (more than a) full time

> job.

> > That is what exhausts me the most about having this condition.

> >

> > My blood pressure rises, my nerves fray, and I'm constantly on edge.

> >

> > Being like that every day all day long is not healthy. There is

> only so

> > much a person can handle. This is why I can't have too much going

> on in

> > my life. I get so overwhelmed that I have no time to come down and

> be in

> > an environment where I can truly relax and recover.

> >

> > I can only begin to tell you how many times I've reached that place

> and

> > was unable to follow through with everything going on in my life.

> It can

> > become very depressing with a feeling of hopelessness and

> worthlessness.

> >

> > This is why a good family connection of understanding about having

> this

> > condition is so important for us who suffer. Without that

> foundation our

> > society can be one hell of a scary and painful place to live. I

> speak

> > from experience.

> >

> > Your daughter is so lucky to have that foundation with you and your

> > family. I do now, but not when I was a kid. It would have made a

> big

> > difference in my life.

> >

> > -Randall

> >

>

July 18, 2008

My mother has sound sensitivities too. I think my Grandmother and Great

Grandmother did as well. Obviously, I also have it too. So that points

to it possibly being a genetic trait in my family.

I think some other experiences I had as a kid, like hitting my head real

hard on the monkey bars or crashing my bike and slamming my head real

hard into the pavement multiple times, as well as a loud bell going off

in my ear every time I wet the bed (I cannot stress hard enough to not

use that system on your kids!!!) only helped to make things even worse.

Kathy Howe wrote:

>

> Another case for the genetic factor:

>

> There was someone early on--a couple of years ago--on this site who said

> that he and all his siblings had this condition. I guess you could

> argue that they all " learned " it from something in their evironment, but

> I would say that both his parents probably had the dominant gene for 4s

> and therefore all their kids--I think it was 5 or 6 kids--got it. They

> would be a great case to study!

>

> Also, there are a couple of sets of identical twins on this site who

> both have it. Once again, you could argue that they had the same

> environmental exposures, but I would argue that they have the exact same

> genes. Another great case to study!

>

> Oh what I would do to have a lot of resources to be able to study this

> crazy condition in a laboratory instead of just on this website!! I

> would do MRIs, CTs, anything I could to see what could be causing this.

> I think it would be fascinating to do an MRI or CT while the person is

> exposed to gum chewing. And especially gum chewing from their worst

> trigger person!

>

> Oh well--just a fantasy.

>

> Kathy

>

> * Re: Ever think we are *not* the ones

> with the problem...?

>

> " Or it's just the sense of being trapped like an animal, with fight-or-

> flight instincts racing and nowhere to go. "

>

> Exactly--my 4s reaction is SO much worse if I know I'm stuck

> somewhere.

>

> " Why do you conclude that a familial trait is genetic and not learned?

> Where do you think people learn to be considerate or to be an

> obnoxious slob? At home, from the family. "

>

> I recently learned that my uncle, who died when I was 13, had 4s,

> and I had no idea before. This doesn't prove a genetic link, of

> course, but I certainly didn't learn it from him, or from anyone

> else in my family, since we were the only lucky two (I'm pretty

> sure.) There's been no research, only stories shared by the group,

> but there does seem to be a genetic factor involved.

>

> I think you have a point about it not being totally our problem.

> Manners have gone downhill fast in the past couple of generations.

> But I'm annoyed by so many things that aren't manners-related:

> traffic, barking dogs (although good mannered-owners should keep

> their dogs happy), anything repetitive like clicking or popping.

> Even if these sounds are made by machines, they bug me. And we

> can't deny that most people just don't care about these little

> noises. Even if they're a bit annoyed, they don't have the extreme

> reaction--so basically the problem is ours, unfortunately.

>

July 18, 2008

Oh, and every time I had one of those experiences (hitting my head on

monkey bars, pavement, etc.) I did not pass out like most kids would have.

Instead I felt more aware of my surroundings. As if I woke up taking

more notice of what was around me.

> I think some other experiences I had as a kid, like hitting my head real

> hard on the monkey bars or crashing my bike and slamming my head real

> hard into the pavement multiple times, as well as a loud bell going off

> in my ear every time I wet the bed (I cannot stress hard enough to not

> use that system on your kids!!!) only helped to make things even worse.

>

> Kathy Howe wrote:

> >

> > Another case for the genetic factor:

> >

> > There was someone early on--a couple of years ago--on this site who said

> > that he and all his siblings had this condition. I guess you could

> > argue that they all " learned " it from something in their evironment, but

> > I would say that both his parents probably had the dominant gene for 4s

> > and therefore all their kids--I think it was 5 or 6 kids--got it. They

> > would be a great case to study!

> >

> > Also, there are a couple of sets of identical twins on this site who

> > both have it. Once again, you could argue that they had the same

> > environmental exposures, but I would argue that they have the exact same

> > genes. Another great case to study!

> >

> > Oh what I would do to have a lot of resources to be able to study this

> > crazy condition in a laboratory instead of just on this website!! I

> > would do MRIs, CTs, anything I could to see what could be causing this.

> > I think it would be fascinating to do an MRI or CT while the person is

> > exposed to gum chewing. And especially gum chewing from their worst

> > trigger person!

> >

> > Oh well--just a fantasy.

> >

> > Kathy

> >

> > * Re: Ever think we are *not* the ones

> > with the problem...?

> >

> > " Or it's just the sense of being trapped like an animal, with fight-or-

> > flight instincts racing and nowhere to go. "

> >

> > Exactly--my 4s reaction is SO much worse if I know I'm stuck

> > somewhere.

> >

> > " Why do you conclude that a familial trait is genetic and not learned?

> > Where do you think people learn to be considerate or to be an

> > obnoxious slob? At home, from the family. "

> >

> > I recently learned that my uncle, who died when I was 13, had 4s,

> > and I had no idea before. This doesn't prove a genetic link, of

> > course, but I certainly didn't learn it from him, or from anyone

> > else in my family, since we were the only lucky two (I'm pretty

> > sure.) There's been no research, only stories shared by the group,

> > but there does seem to be a genetic factor involved.

> >

> > I think you have a point about it not being totally our problem.

> > Manners have gone downhill fast in the past couple of generations.

> > But I'm annoyed by so many things that aren't manners-related:

> > traffic, barking dogs (although good mannered-owners should keep

> > their dogs happy), anything repetitive like clicking or popping.

> > Even if these sounds are made by machines, they bug me. And we

> > can't deny that most people just don't care about these little

> > noises. Even if they're a bit annoyed, they don't have the extreme

> > reaction--so basically the problem is ours, unfortunately.

> >

>

July 18, 2008

Randall, I thought you might like to read the lyrics from a song called "All the Time" by Barry Manilow and Marty Panzer. It really fits with what you said. Here they are: All The Time I thought there's only mecrazy in a way that no one else could be,I would have given everything I own,If someone would have said you're not alone.All The Time, all the wasted time, All the years waiting for a s ign,To think I had it allAll The TimeAll The Time I thought that I was wrong,wanting to be but needing to belong,If I had just believed in all I had,If someone would have said you're not so bad.All The Time, all the wasted time, All the years waiting for a sign, To think I had it allAll The TimeAll The Time I Thought there's only mecrazy in a way that no one else could beI

can't believe that you were somewhere too,thinking All The Time there's only you.All The Time, all the waste d time, All the years waiting for a sign,To think I had it allAll The Time Randall wrote: It makes me cry too. I never expected to feel a kinship with anyone about this condition. I thought I was alone for so long. With this group I don't feel like this kind of sensitivity is all my fault anymore.Being alone IS depressing. I am used to

it more now, because it is the only way to keep me from being constantly on the edge. Having a relationship is difficult when dealing with this condition.I feel very fortunate right now in my life that I'm not so overwhelmed as I ended up being a year and a half ago. My parents are here for me right now and I thank God for them. After all these years, they now understand what I go through.Thank you for being here and writing back to me. I wish I could give you a hug right now. Take care.-Randalltmpendleton_1 wrote:> > > Randall,> > I am sitting here reading your note, with tears in my eyes. It IS so> exhausting, being on guard 24/7. At the end of a workday, I am so> tired. The only time I have peace from 4S is when I am alone, but I> hate being alone. It IS so depressing, and I guess I am just having> one of those days, where I just want to cry

thinking about it.> > > >> > Kathy you hit the nail on the head.> >> > It is the RAGE & ANXIETY that is difficult to deal with. Trying to> keep> > those under control 24/7 is a frustrating (more than a) full time> job.> > That is what exhausts me the most about having this condition.> >> > My blood pressure rises, my nerves fray, and I'm constantly on edge.> >> > Being like that every day all day long is not healthy. There is> only so> > much a person can handle. This is why I can't have too much going> on in> > my life. I get so overwhelmed that I have no time to come down and> be

in> > an environment where I can truly relax and recover.> >> > I can only begin to tell you how many times I've reached that place> and> > was unable to follow through with everything going on in my life.> It can> > become very depressing with a feeling of hopelessness and> worthlessness.> >> > This is why a good family connection of understanding about having> this> > condition is so important for us who suffer. Without that> foundation our> > society can be one hell of a scary and painful place to live. I> speak> > from experience.> >> > Your daughter is so lucky to have that foundation with you and your> > family. I do now, but not when I was a kid. It would have made a> big> > difference in my life.> >> > -Randall> >> >> >>

>> >> >

July 18, 2008

I have pudendal neuralgia. And nerves are very sensitive to anything, so it is definetely possible - just knowing cause it is like that with me - that there very well could be pain associated with reacting to the noises like we do. I absolutely can't stand the noises. I keep my cats in the other room all day. Every soft noise bothers me, i.e. water dripping, whatever. But my worse are animals grooming themselves and gum chewing. I would probably go crazy if I didn't have my earplugs, because those noises make my chronic condition flare up - and it is absolutely painful.

What kind of nerve condition did you get and how were you diagnosed?

And yes--many people on this site do have physical symptoms like electrical shocks to certain parts of their bodies when they hear the trigger sounds. I think that could be a clue to look at if we get research.