Re: Just curious....a poll of sorts

November 24, 2008

Hi, Here are my answers -

I am wondering a couple things about everyone. I thought it could beinteresting to see everyone's replies.When did you first notice your 4s symptoms? about 10 yo

Are you sure of when they started or are you making a guess? i would have to guessWhat sounds bother you? gum chewing/snapping, crunching sounds, whistling, eating noises in general

Does any one person or group of people bother you more than others? used to be mostly my parents, but now I'm not around them so much, now it is my husband (the poor guy) and my children sometimes if I'm in a bad mood or tired.What is your "inside" reaction I want to punch/hurt the source of the noise.How do you actually react? I try to leave the situation, use a radio or turn the TV up, cover a ear.What are some reactions you've gotten from others when you've been"annoyed" by their noises? My husband tells me to ignore it, my family makes fun of me, my kids just try to avoid me when I'm storming.How would you rate your 4S? Mild, moderate, severe, profound? I'd have to say moderate, but it can become sever depending on the situation that I am

in.

November 24, 2008

Here are my answers!!

>

> When did you first notice your 4s symptoms? 10-12

>

> Are you sure of when they started or are you making a guess? I'm

guessing I had it at 10 but I am positively sure I had it at 12.

>

> What sounds bother you? Eating noises whether by a person with

their mouth open or shut... doesn't matter I can still hear it!

Crunching ice, chips, carrots, popcorn, etc... Gum popping, dogs

licking paws, dogs(some) barking in distance, my husbands bird

squawking and bluejays squawking, sniffing, throat clearing, chewing

fingernails. I do have some visual triggers such as people swinging

their legs or tapping their feet, or seeing my dogs lick their paws.

>

> Does any one person or group of people bother you more than others?

Started with my father, now it's my husband. Generally strangers

bother me on different degree's but it's eating noises that strangers

bother me most on.

>

>What is your " inside " reaction? My stomach sort of sinks. I feel

like my blood starts to boil, I start to feel really irritated and

anxious.

>

> How do you actually react? I leave if possible. If I can't, I say

things like " stop it " and sometimes I'll yell. If I'm in a public

situation I internalize things and think of things I'd like to do

(like knock someones head off)

>

> What are some reactions you've gotten from others when you've been

> " annoyed " by their noises? My husband thinks I'm crazy and that

I " Let " things bother me. I've been told to " just deal with it " .

>

> How would you rate your 4S? Mild, moderate, severe, profound? I

would say moderate on a daily basis but some days are severe.

November 24, 2008

Hello All,

I was thinking last night, and after reading the post below,

although we are all talking about this and making progress imo, we are

making a lot of connections here too but I am worried that we are not recording

these down to see the logical links. If I am incorrect please let me know, but

how would everyone feel about a database of information being collected so that

we can cross reference information we are getting over the long term and see if

there are any connections???

I had this idea that the database could contain information such

as some of the questions below, and also ranging to ancestery, sex, weight diet

and even moving into things like eye color and other personality traits.

There is of course worries about privacy etc etc and I am not

sure how comfortable everyone is with this, or if it has already been done, but

I think we could make great progress if the information were stored in a place

that would allow cross referencing rather then only through emails? Your

thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I was about 13-14

I am sure.

Crunching, gulping smacking lips knives and forks on plates,

scraping, coughing to some degree, soft breathing, gum smacking, movement out

of the corner of my eye, dogs licking paws dogs drinking, sniffing, muffeled

voices in another room, keyboar typing (on bad days) sound of water being

poured into a glass. Slurping, squishy food, ummm I think thats it at the

moment.

Depends on my mood at the time, there is aparticular type of

person and everyone here knows the type that I am talking about that seems to

have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have to leave, complete shut

down in side, scared and sad, feeling lost and hopeless, must make them stop! Ust

want to be left alone in silence and sometimes wishing I were deaf, wish it was

over and always looking for a way out, wishing I wasn’t such a bother on

my family and others around me, wishing I could control.

Others have apologised, done the noise more, confused,

frustrated that I am angry, angry, moving away not understanding and

understanding.

Depends on my mood and how much sleep I get but it ranges from

Moderate to severe.

By the way, how many people here would rate them selves a control

freak ~not because~ of the 4S but naturally.???

Kind Regards

Rich

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone.

I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your " inside " reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 24, 2008

Wow Rich...my answers would have to be identical to yours...except for I don't know where I first noticed my condition. GREAT idea about the database...just wondering how we would be able to compile all the information. Maybe there's some sort of "online survey" that we can create...I think they must have had me in mind when they created the term "control freak" )andraFrom: McKenna

To: Soundsensitivity Sent: Tuesday, November 25, 2008 2:30:42 PMSubject: RE: Just curious....a poll of sorts

Hello All, I was thinking last night, and after reading the post below,

although we are all talking about this and making progress imo, we are

making a lot of connections here too but I am worried that we are not recording

these down to see the logical links. If I am incorrect please let me know, but

how would everyone feel about a database of information being collected so that

we can cross reference information we are getting over the long term and see if

there are any connections??? I had this idea that the database could contain information such

as some of the questions below, and also ranging to ancestery, sex, weight diet

and even moving into things like eye color and other personality traits. There is of course worries about privacy etc etc and I am not

sure how comfortable everyone is with this, or if it has already been done, but

I think we could make great progress if the information were stored in a place

that would allow cross referencing rather then only through emails? Your

thoughts please??? In response to below: I noticed my 4s in a movie cinema when I was about 13-14 I am sure. Crunching, gulping smacking lips knives and forks on plates,

scraping, coughing to some degree, soft breathing, gum smacking, movement out

of the corner of my eye, dogs licking paws dogs drinking, sniffing, muffeled

voices in another room, keyboar typing (on bad days) sound of water being

poured into a glass. Slurping, squishy food, ummm I think thats it at the

moment. Depends on my mood at the time, there is aparticular type of

person and everyone here knows the type that I am talking about that seems to

have all of the above in one nice little package! Anger aggression, disgust! Hartred, have to leave, complete shut

down in side, scared and sad, feeling lost and hopeless, must make them stop! Ust

want to be left alone in silence and sometimes wishing I were deaf, wish it was

over and always looking for a way out, wishing I wasn¢t such a bother on

my family and others around me, wishing I could control. Others have apologised, done the noise more, confused,

frustrated that I am angry, angry, moving away not understanding and

understanding. Depends on my mood and how much sleep I get but it ranges from

Moderate to severe. By the way, how many people here would rate them selves a control

freak ~not because~ of the 4S but naturally.??? Kind Regards Rich

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone.

I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your "inside" reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

"annoyed" by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 24, 2008

Hi Rich,

You are absolutely right, I was thinking the same thing..... Unless someone else has already started to take note I would be more than happy to track back and create a data base with all the nuances and specifics about 4S that you have all been sharing.

To: Soundsensitivity Sent: Tuesday, November 25, 2008 6:30:42 AMSubject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after reading the post below, although we are all talking about this and making progress imo, we are making a lot of connections here too but I am worried that we are not recording these down to see the logical links. If I am incorrect please let me know, but how would everyone feel about a database of information being collected so that we can cross reference information we are getting over the long term and see if there are any connections? ??

I had this idea that the database could contain information such as some of the questions below, and also ranging to ancestery, sex, weight diet and even moving into things like eye color and other personality traits.

There is of course worries about privacy etc etc and I am not sure how comfortable everyone is with this, or if it has already been done, but I think we could make great progress if the information were stored in a place that would allow cross referencing rather then only through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I was about 13-14

I am sure.

Crunching, gulping smacking lips knives and forks on plates, scraping, coughing to some degree, soft breathing, gum smacking, movement out of the corner of my eye, dogs licking paws dogs drinking, sniffing, muffeled voices in another room, keyboar typing (on bad days) sound of water being poured into a glass. Slurping, squishy food, ummm I think thats it at the moment.

Depends on my mood at the time, there is aparticular type of person and everyone here knows the type that I am talking about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have to leave, complete shut down in side, scared and sad, feeling lost and hopeless, must make them stop! Ust want to be left alone in silence and sometimes wishing I were deaf, wish it was over and always looking for a way out, wishing I wasn¢t such a bother on my family and others around me, wishing I could control.

Others have apologised, done the noise more, confused, frustrated that I am angry, angry, moving away not understanding and understanding.

Depends on my mood and how much sleep I get but it ranges from Moderate to severe.

By the way, how many people here would rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com [mailto:Soundsensit ivity@yahoogroup s.com] On Behalf Of andrealeigh4Sent: Tuesday, 25 November 2008 5:15 AMTo: Soundsensitivity@ yahoogroups. comSubject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could beinteresting to see everyone's replies.When did you first notice your 4s symptoms?Are you sure of when they started or are you making a guess?What sounds bother you?Does any one person or group of people bother you more than others?What is your "inside" reaction?How do you actually react?What are some reactions you've gotten from others when you've been"annoyed" by their noises?How would you rate your 4S? Mild, moderate, severe, profound?

November 24, 2008

Hi a,

As would I , but a fresh survey might make tracking this

information a lot easier, im not sure I have never done one of these before....

Thoughts?

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of a Pereira

Sent: Tuesday, 25 November 2008 5:32 PM

To: Soundsensitivity

Subject: Re: Just curious....a poll of sorts

Hi Rich,

You are absolutely right, I was thinking the same

thing..... Unless someone else has already started to take note I would

be more than happy to track back and create a data base with all the nuances

and specifics about 4S that you have all been sharing.

To: Soundsensitivity

Sent: Tuesday, November 25, 2008 6:30:42 AM

Subject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after

reading the post below, although we are all talking about this and making

progress imo, we are making a lot of connections here too but I am worried that

we are not recording these down to see the logical links. If I am incorrect

please let me know, but how would everyone feel about a database of information

being collected so that we can cross reference information we are getting over

the long term and see if there are any connections? ??

I had this idea that the database could

contain information such as some of the questions below, and also ranging to

ancestery, sex, weight diet and even moving into things like eye color and

other personality traits.

There is of course worries about privacy

etc etc and I am not sure how comfortable everyone is with this, or if it has

already been done, but I think we could make great progress if the information

were stored in a place that would allow cross referencing rather then only

through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I

was about 13-14

I am sure.

Crunching, gulping smacking lips knives

and forks on plates, scraping, coughing to some degree, soft breathing, gum

smacking, movement out of the corner of my eye, dogs licking paws dogs

drinking, sniffing, muffeled voices in another room, keyboar typing (on bad

days) sound of water being poured into a glass. Slurping, squishy food, ummm I

think thats it at the moment.

Depends on my mood at the time, there is

aparticular type of person and everyone here knows the type that I am talking

about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have

to leave, complete shut down in side, scared and sad, feeling lost and

hopeless, must make them stop! Ust want to be left alone in silence and

sometimes wishing I were deaf, wish it was over and always looking for a way

out, wishing I wasn¢t such a bother on my family and others around me, wishing

I could control.

Others have apologised, done the noise

more, confused, frustrated that I am angry, angry, moving away not

understanding and understanding.

Depends on my mood and how much sleep I

get but it ranges from Moderate to severe.

By the way, how many people here would

rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com]

On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity@ yahoogroups. com

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your " inside " reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 24, 2008

That survey is inconclusive, since the same answer won't be accepted in any column.

= M-F.

----- Original Message -----

From: McKenna

>otherwise I know that Marsha created a survey similar some weeks ago, Maybe it was used by this website??

>http://www.surveymonkey.com/

>Anyway, I know that Dr is doing a lot of work on this, as always, but two heads or in this case 759 heads are better then J

> (glad I can spell my own name.... it has been one of these days J )

November 24, 2008

Ah teach me to read ahead before posting.

Hmmm in a rather bad state at the moment, I have retreated to my

bedroom as almost all sounds are getting to me. I have noticed that when I

enter these sates, my speech slurs somewhat, I feel slow and generally cant

think. Does anyone else get this???

I have set up a brainwave entertainment track designed to make

me wide awake and uplift my mood, in fact it should make me very aware of

everything, Im trying to rip myself out of this state.

Information as follows:

Session length 1 Hr

Ramp from 14.2 Mhz to 55mhz over 15 minutes, remaining at 55 mhz

for the duration of the track no ramp down.

Entertainment amplitude phase 246.5 Sine waveform

Intensity 63

Filtered from Trance music.

Information above for my own research and if anyone else has any

suggestions, the ramp is quick and is likely to give me a headache.

On a side note i’m getting thoroughly annoyed with this

email to Oprah, Im 54 characters over!!!!

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of a Pereira

Sent: Tuesday, 25 November 2008 5:37 PM

To: Soundsensitivity

Subject: Re: Just curious....a poll of sorts

andra,

Great idea about creating the survey. Maybe you can

create a draft of the survey and send it to the group? Then everyone can add

questions that they think are important....then once the final is approved by

everyone it can be individualy completed and stored.

To: Soundsensitivity

Sent: Tuesday, November 25, 2008 6:41:15 AM

Subject: Re: Just curious....a poll of sorts

Wow

Rich...my answers would have to be identical to yours...except for I don't know

where I first noticed my condition.

GREAT idea about the database...just wondering how we would be able to compile

all the information. Maybe there's some sort of " online survey "

that we can create...

I think they must have had me in mind when they created the term " control

freak " )

andra

From: McKenna <r.mckennawestnet (DOT) com.au>

To: Soundsensitivity@ yahoogroups. com

Sent: Tuesday, November 25, 2008 2:30:42 PM

Subject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after

reading the post below, although we are all talking about this and making

progress imo, we are making a lot of connections here too but I am worried that

we are not recording these down to see the logical links. If I am incorrect

please let me know, but how would everyone feel about a database of information

being collected so that we can cross reference information we are getting over

the long term and see if there are any connections? ??

I had this idea that the database could

contain information such as some of the questions below, and also ranging to

ancestery, sex, weight diet and even moving into things like eye color and

other personality traits.

There is of course worries about privacy

etc etc and I am not sure how comfortable everyone is with this, or if it has

already been done, but I think we could make great progress if the information

were stored in a place that would allow cross referencing rather then only

through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I

was about 13-14

I am sure.

Crunching, gulping smacking lips knives

and forks on plates, scraping, coughing to some degree, soft breathing, gum

smacking, movement out of the corner of my eye, dogs licking paws dogs

drinking, sniffing, muffeled voices in another room, keyboar typing (on bad

days) sound of water being poured into a glass. Slurping, squishy food, ummm I

think thats it at the moment.

Depends on my mood at the time, there is

aparticular type of person and everyone here knows the type that I am talking

about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have

to leave, complete shut down in side, scared and sad, feeling lost and

hopeless, must make them stop! Ust want to be left alone in silence and

sometimes wishing I were deaf, wish it was over and always looking for a way

out, wishing I wasn¢t such a bother on my family and others around me, wishing

I could control.

Others have apologised, done the noise

more, confused, frustrated that I am angry, angry, moving away not

understanding and understanding.

Depends on my mood and how much sleep I

get but it ranges from Moderate to severe.

By the way, how many people here would

rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com]

On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity@ yahoogroups. com

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your " inside " reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 25, 2008

I recall, It does appear that the example survey on the website

below allowed multiple entries in the same column..... I hope

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of Multi-Facets

Wolfu-chan

Sent: Tuesday, 25 November 2008 6:58 PM

To: Soundsensitivity

Subject: Re: Just curious....a poll of sorts

That survey

is inconclusive, since the same answer won't be accepted in any column.

= M-F.

-----

Original Message -----

From: McKenna

>otherwise

I know that Marsha created a survey similar some weeks ago, Maybe it

was used by this website??

>http://www.surveymonkey.com/

>Anyway, I know that Dr is

doing a lot of work on this, as always, but two heads or in this case 759 heads

are better then J

> (glad I can spell my own

name.... it has been one of these days J )

November 25, 2008

I took a look at this site and, in theory, it seems straighforward and user friendly. I don't mind creating a sample survey and sending it to the group for everyone's critique and suggestions. Rich (or anyone else), if you are good with computer applications and would like to take on the sample survey instead please let me know. As I mentioned in my earlier emails, I do not suffer from 4S, my sister andra does. I have joined to learn more about the disorder and help search for solutions/treatments in any way that I can. Any thoughts? Suggestions?

a

To: Soundsensitivity Sent: Tuesday, November 25, 2008 7:42:59 AMSubject: Re: Just curious....a poll of sorts

This is great a...I actually just went in to see how we can set up a survey on the surveymonkey link that Rich sent and it seems fairly easy and straight forward. Just open an account (easy and free) and you can start making your own survey. You can choose from different types of multiple choice answers and so forth. Why don't you have a look and let us know what you think.We can put questions on there like the ones that Rich stated....having to do with lifestyle, health, nutrition/diet, symptoms, phobias, family history, sex, weight, physical and personality characteristics and so forth.Let me know if you need any help!andra

From: a Pereira <susana.pereira73@ yahoo.com>To: Soundsensitivity@ yahoogroups. comSent: Tuesday, November 25, 2008 3:32:11 PMSubject: Re: Just curious....a poll of sorts

Hi Rich,

You are absolutely right, I was thinking the same thing..... Unless someone else has already started to take note I would be more than happy to track back and create a data base with all the nuances and specifics about 4S that you have all been sharing.

From: McKenna <r.mckennawestnet (DOT) com.au>To: Soundsensitivity@ yahoogroups. comSent: Tuesday, November 25, 2008 6:30:42 AMSubject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after reading the post below, although we are all talking about this and making progress imo, we are making a lot of connections here too but I am worried that we are not recording these down to see the logical links. If I am incorrect please let me know, but how would everyone feel about a database of information being collected so that we can cross reference information we are getting over the long term and see if there are any connections? ??

I had this idea that the database could contain information such as some of the questions below, and also ranging to ancestery, sex, weight diet and even moving into things like eye color and other personality traits.

There is of course worries about privacy etc etc and I am not sure how comfortable everyone is with this, or if it has already been done, but I think we could make great progress if the information were stored in a place that would allow cross referencing rather then only through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I was about 13-14

I am sure.

Crunching, gulping smacking lips knives and forks on plates, scraping, coughing to some degree, soft breathing, gum smacking, movement out of the corner of my eye, dogs licking paws dogs drinking, sniffing, muffeled voices in another room, keyboar typing (on bad days) sound of water being poured into a glass. Slurping, squishy food, ummm I think thats it at the moment.

Depends on my mood at the time, there is aparticular type of person and everyone here knows the type that I am talking about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have to leave, complete shut down in side, scared and sad, feeling lost and hopeless, must make them stop! Ust want to be left alone in silence and sometimes wishing I were deaf, wish it was over and always looking for a way out, wishing I wasn¢t such a bother on my family and others around me, wishing I could control.

Others have apologised, done the noise more, confused, frustrated that I am angry, angry, moving away not understanding and understanding.

Depends on my mood and how much sleep I get but it ranges from Moderate to severe.

By the way, how many people here would rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com [mailto:Soundsensit ivity@yahoogroup s.com] On Behalf Of andrealeigh4Sent: Tuesday, 25 November 2008 5:15 AMTo: Soundsensitivity@ yahoogroups. comSubject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could beinteresting to see everyone's replies.When did you first notice your 4s symptoms?Are you sure of when they started or are you making a guess?What sounds bother you?Does any one person or group of people bother you more than others?What is your "inside" reaction?How do you actually react?What are some reactions you've gotten from others when you've been"annoyed" by their noises?How would you rate your 4S? Mild, moderate, severe, profound?

November 25, 2008

I don’t believe it, I don’t know if it was a placebo,

if i wasn’t as bad as I thought I was, if it was a multitude of other

factors or if it was the brainwave track, but.... I just managed to sit through

an entire dinner meal, with scrapping slurping, banging from knives and forks

and motor mouths, a lot of multi conversation talking and loud gulping, normally

my dodge zone in 1 minute!.

It wasn’t easy, and the noises were still...uncomfortable,

but that felt more a learned response, I actually did not feel the need to run

away and my anger was certainly down! I don’t know if I should be very

happy or very confused.

My head is rather sore, and I am rather irritable but at the

same time somewhat calm, not like my normal stress ball after a family dinner....

I will need quite a lot more testing to see if it was the high

level beta track that has helped, and if it is.... maybe this is a key to

something...maybe... I really hope it is because that means we might be able to

adapt something... I don’t know if I should be letting myself get my

hopes up but... I want to this time. I want to hope.

I have also sent a letter to Oprah, got it down to less then

2000 characters as it wouldn’t seem to take 2000, here it is:

Dear Oprah

Im a 22 year old male who suffers from a condition called Soft

Sound Sensitivity Syndrome or 4S. It is the collapsed tolerance to certain

sounds in particular crunching gulping lip smacking soft breathing & many

other sounds. When I hear these noises I feel an uncontrollable disgust &

aggression towards the person making them & often I am forced to leave to

escape. If I stay feelings of despair isolation & inability to cope overwhelm

me. It hurts me to feel this way to the people I care about most, most when

they are doing nothing wrong & are victims to my outburst or disappearances

almost nightly at family dinners, worse still is my sadness from not being able

to hold my partner as we fall asleep as the sound of her breathing is like a

hurricane of anxiety in my mind. It hurts me more to read stories of parents

with 4S who are afraid to hear their own children eat or cry as this is a

trigger sound for them. I cant imagine the pain that it would cause for a

parent to feel so aggressive towards a child they love so dearly, without any

ability to control these feelings, without any hope of a cure.

An online group dedicated to people with this condition are

desperately trying to contact you as 4S has yet to be formally diagnosed &

has received little attention from the medical community. 4S deteriorates over

time & is crippling to the majority of peoples lives, forcing them away

from social events, friends, family & eventually society as a whole.

We beg for your support in bringing awareness of this condition

to the media in hopes that others with 4S understand theyare not alone &

research is instigated for a cure. I know that you probably receive thousands

of emails a day asking for help, but I know in my heart that if you bring

awareness of 4S to the world, you will give hope to thousands if not millions

of people who are living with this condition, hope, that one day there will be

a cure & one day we will be able to live a normal life.

With Hope

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of McKenna

Sent: Tuesday, 25 November 2008 6:59 PM

To: Soundsensitivity

Subject: RE: Just curious....a poll of sorts

Ah teach me to read ahead before posting.

Hmmm in a rather bad state at the

moment, I have retreated to my bedroom as almost all sounds are getting to me.

I have noticed that when I enter these sates, my speech slurs somewhat, I

feel slow and generally cant think. Does anyone else get this???

I have set up a brainwave entertainment

track designed to make me wide awake and uplift my mood, in fact it should make

me very aware of everything, Im trying to rip myself out of this state.

Information as follows:

Session length 1 Hr

Ramp from 14.2 Mhz to 55mhz over 15

minutes, remaining at 55 mhz for the duration of the track no ramp down.

Entertainment amplitude phase 246.5 Sine

waveform

Intensity 63

Filtered from Trance music.

Information above for my own research

and if anyone else has any suggestions, the ramp is quick and is likely to give

me a headache.

On a side note i’m getting

thoroughly annoyed with this email to Oprah, Im 54 characters over!!!!

From: Soundsensitivity [mailto:Soundsensitivity ]

On Behalf Of a Pereira

Sent: Tuesday, 25 November 2008 5:37 PM

To: Soundsensitivity

Subject: Re: Just curious....a poll of sorts

andra,

Great

idea about creating the survey. Maybe you can create a draft of the

survey and send it to the group? Then everyone can add questions that they

think are important....then once the final is approved by everyone it can be

individualy completed and stored.

From:

andra Ruiz

To: Soundsensitivity

Sent: Tuesday, November 25, 2008 6:41:15 AM

Subject: Re: Just curious....a poll of sorts

Wow Rich...my answers would

have to be identical to yours...except for I don't know where I first noticed

my condition.

GREAT idea about the database...just wondering how we would be able to compile

all the information. Maybe there's some sort of " online survey "

that we can create...

I think they must have had me in mind when they created the term " control

freak " )

andra

From:

McKenna <r.mckennawestnet (DOT) com.au>

To: Soundsensitivity@ yahoogroups. com

Sent: Tuesday, November 25, 2008 2:30:42 PM

Subject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after

reading the post below, although we are all talking about this and making

progress imo, we are making a lot of connections here too but I am worried that

we are not recording these down to see the logical links. If I am incorrect

please let me know, but how would everyone feel about a database of information

being collected so that we can cross reference information we are getting over

the long term and see if there are any connections? ??

I had this idea that the database could

contain information such as some of the questions below, and also ranging to

ancestery, sex, weight diet and even moving into things like eye color and

other personality traits.

There is of course worries about privacy

etc etc and I am not sure how comfortable everyone is with this, or if it has

already been done, but I think we could make great progress if the information

were stored in a place that would allow cross referencing rather then only

through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I

was about 13-14

I am sure.

Crunching, gulping smacking lips knives

and forks on plates, scraping, coughing to some degree, soft breathing, gum

smacking, movement out of the corner of my eye, dogs licking paws dogs

drinking, sniffing, muffeled voices in another room, keyboar typing (on bad

days) sound of water being poured into a glass. Slurping, squishy food, ummm I

think thats it at the moment.

Depends on my mood at the time, there is

aparticular type of person and everyone here knows the type that I am talking

about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have

to leave, complete shut down in side, scared and sad, feeling lost and

hopeless, must make them stop! Ust want to be left alone in silence and

sometimes wishing I were deaf, wish it was over and always looking for a way

out, wishing I wasn¢t such a bother on my family and others around me, wishing

I could control.

Others have apologised, done the noise

more, confused, frustrated that I am angry, angry, moving away not

understanding and understanding.

Depends on my mood and how much sleep I

get but it ranges from Moderate to severe.

By the way, how many people here would

rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com]

On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity@ yahoogroups. com

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your " inside " reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 25, 2008

, this is a GREAT email!!! You have amazing communication skills and were able to touch on the key issues that would make a non 4Ser want to know more. Thanks from all of us to everyone that has sent in their personal email to Oprah.

a

To: Soundsensitivity Sent: Tuesday, November 25, 2008 9:36:50 AMSubject: RE: Just curious....a poll of sorts

I don¢t believe it, I don¢t know if it was a placebo, if i wasn¢t as bad as I thought I was, if it was a multitude of other factors or if it was the brainwave track, but.... I just managed to sit through an entire dinner meal, with scrapping slurping, banging from knives and forks and motor mouths, a lot of multi conversation talking and loud gulping, normally my dodge zone in 1 minute!.

It wasn¢t easy, and the noises were still...uncomfortab le, but that felt more a learned response, I actually did not feel the need to run away and my anger was certainly down! I don¢t know if I should be very happy or very confused.

My head is rather sore, and I am rather irritable but at the same time somewhat calm, not like my normal stress ball after a family dinner....

I will need quite a lot more testing to see if it was the high level beta track that has helped, and if it is.... maybe this is a key to something... maybe... I really hope it is because that means we might be able to adapt something... I don¢t know if I should be letting myself get my hopes up but... I want to this time. I want to hope.

I have also sent a letter to Oprah, got it down to less then 2000 characters as it wouldn¢t seem to take 2000, here it is:

Dear Oprah

Im a 22 year old male who suffers from a condition called Soft Sound Sensitivity Syndrome or 4S. It is the collapsed tolerance to certain sounds in particular crunching gulping lip smacking soft breathing & many other sounds. When I hear these noises I feel an uncontrollable disgust & aggression towards the person making them & often I am forced to leave to escape. If I stay feelings of despair isolation & inability to cope overwhelm me. It hurts me to feel this way to the people I care about most, most when they are doing nothing wrong & are victims to my outburst or disappearances almost nightly at family dinners, worse still is my sadness from not being able to hold my partner as we fall asleep as the sound of her breathing is like a hurricane of anxiety in my mind. It hurts me more to read stories of parents with 4S who are afraid to hear their own children eat or

cry as this is a trigger sound for them. I cant imagine the pain that it would cause for a parent to feel so aggressive towards a child they love so dearly, without any ability to control these feelings, without any hope of a cure.

An online group dedicated to people with this condition are desperately trying to contact you as 4S has yet to be formally diagnosed & has received little attention from the medical community. 4S deteriorates over time & is crippling to the majority of peoples lives, forcing them away from social events, friends, family & eventually society as a whole.

We beg for your support in bringing awareness of this condition to the media in hopes that others with 4S understand theyare not alone & research is instigated for a cure. I know that you probably receive thousands of emails a day asking for help, but I know in my heart that if you bring awareness of 4S to the world, you will give hope to thousands if not millions of people who are living with this condition, hope, that one day there will be a cure & one day we will be able to live a normal life.

With Hope

From: Soundsensitivity@ yahoogroups. com [mailto:Soundsensit ivity@yahoogroup s.com] On Behalf Of McKennaSent: Tuesday, 25 November 2008 6:59 PMTo: Soundsensitivity@ yahoogroups. comSubject: RE: Just curious....a poll of sorts

Ah teach me to read ahead before posting.

Hmmm in a rather bad state at the moment, I have retreated to my bedroom as almost all sounds are getting to me. I have noticed that when I enter these sates, my speech slurs somewhat, I feel slow and generally cant think. Does anyone else get this???

I have set up a brainwave entertainment track designed to make me wide awake and uplift my mood, in fact it should make me very aware of everything, Im trying to rip myself out of this state.

Information as follows:

Session length 1 Hr

Ramp from 14.2 Mhz to 55mhz over 15 minutes, remaining at 55 mhz for the duration of the track no ramp down.

Entertainment amplitude phase 246.5 Sine waveform

Intensity 63

Filtered from Trance music.

Information above for my own research and if anyone else has any suggestions, the ramp is quick and is likely to give me a headache.

On a side note i¢m getting thoroughly annoyed with this email to Oprah, Im 54 characters over!!!!

From: Soundsensitivity@ yahoogroups. com [mailto:Soundsensit ivity@yahoogroup s.com] On Behalf Of a PereiraSent: Tuesday, 25 November 2008 5:37 PMTo: Soundsensitivity@ yahoogroups. comSubject: Re: Just curious....a poll of sorts

andra,

Great idea about creating the survey. Maybe you can create a draft of the survey and send it to the group? Then everyone can add questions that they think are important... .then once the final is approved by everyone it can be individualy completed and stored.

From: andra Ruiz <alexandrara@ yahoo.com>To: Soundsensitivity@ yahoogroups. comSent: Tuesday, November 25, 2008 6:41:15 AMSubject: Re: Just curious....a poll of sorts

Wow Rich...my answers would have to be identical to yours...except for I don't know where I first noticed my condition. GREAT idea about the database...just wondering how we would be able to compile all the information. Maybe there's some sort of "online survey" that we can create...I think they must have had me in mind when they created the term "control freak" )andra

From: McKenna <r.mckennawestnet (DOT) com.au>To: Soundsensitivity@ yahoogroups. comSent: Tuesday, November 25, 2008 2:30:42 PMSubject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after reading the post below, although we are all talking about this and making progress imo, we are making a lot of connections here too but I am worried that we are not recording these down to see the logical links. If I am incorrect please let me know, but how would everyone feel about a database of information being collected so that we can cross reference information we are getting over the long term and see if there are any connections? ??

I had this idea that the database could contain information such as some of the questions below, and also ranging to ancestery, sex, weight diet and even moving into things like eye color and other personality traits.

There is of course worries about privacy etc etc and I am not sure how comfortable everyone is with this, or if it has already been done, but I think we could make great progress if the information were stored in a place that would allow cross referencing rather then only through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I was about 13-14

I am sure.

Crunching, gulping smacking lips knives and forks on plates, scraping, coughing to some degree, soft breathing, gum smacking, movement out of the corner of my eye, dogs licking paws dogs drinking, sniffing, muffeled voices in another room, keyboar typing (on bad days) sound of water being poured into a glass. Slurping, squishy food, ummm I think thats it at the moment.

Depends on my mood at the time, there is aparticular type of person and everyone here knows the type that I am talking about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have to leave, complete shut down in side, scared and sad, feeling lost and hopeless, must make them stop! Ust want to be left alone in silence and sometimes wishing I were deaf, wish it was over and always looking for a way out, wishing I wasn¢t such a bother on my family and others around me, wishing I could control.

Others have apologised, done the noise more, confused, frustrated that I am angry, angry, moving away not understanding and understanding.

Depends on my mood and how much sleep I get but it ranges from Moderate to severe.

By the way, how many people here would rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com [mailto:Soundsensit ivity@yahoogroup s.com] On Behalf Of andrealeigh4Sent: Tuesday, 25 November 2008 5:15 AMTo: Soundsensitivity@ yahoogroups. comSubject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could beinteresting to see everyone's replies.When did you first notice your 4s symptoms?Are you sure of when they started or are you making a guess?What sounds bother you?Does any one person or group of people bother you more than others?What is your "inside" reaction?How do you actually react?What are some reactions you've gotten from others when you've been"annoyed" by their noises?How would you rate your 4S? Mild, moderate, severe, profound?

November 25, 2008

Thankyou J I realised my mistake after sending the email, its no longer

called soft sound sensitivity syndrome by selective? I place that down to less

than an hour sleep. I have been reading through the new web site, there is a

lot of information on there and the letter there that was sent to Oprah is very

very good, hopefully with all of our letters action will be taken.

Rich

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of a Pereira

Sent: Tuesday, 25 November 2008 7:56 PM

To: Soundsensitivity

Subject: Re: Just curious....a poll of sorts

, this is a GREAT email!!! You have amazing

communication skills and were able to touch on the key issues that would make a

non 4Ser want to know more. Thanks from all of us to everyone

that has sent in their personal email to Oprah.

a

To: Soundsensitivity

Sent: Tuesday, November 25, 2008 9:36:50 AM

Subject: RE: Just curious....a poll of sorts

I don¢t believe it, I don¢t know if it

was a placebo, if i wasn¢t as bad as I thought I was, if it was a multitude of

other factors or if it was the brainwave track, but.... I just managed to sit

through an entire dinner meal, with scrapping slurping, banging from knives and

forks and motor mouths, a lot of multi conversation talking and loud gulping,

normally my dodge zone in 1 minute!.

It wasn¢t easy, and the noises were

still...uncomfortab le, but that felt more a learned response, I actually did

not feel the need to run away and my anger was certainly down! I don¢t know if

I should be very happy or very confused.

My head is rather sore, and I am rather

irritable but at the same time somewhat calm, not like my normal stress ball

after a family dinner....

I will need quite a lot more testing to

see if it was the high level beta track that has helped, and if it is.... maybe

this is a key to something... maybe... I really hope it is because that means

we might be able to adapt something... I don¢t know if I should be letting

myself get my hopes up but... I want to this time. I want to hope.

I have also sent a letter to Oprah, got

it down to less then 2000 characters as it wouldn¢t seem to take 2000, here it

is:

Dear Oprah

Im a 22 year old male who suffers from a

condition called Soft Sound Sensitivity Syndrome or 4S. It is the collapsed

tolerance to certain sounds in particular crunching gulping lip smacking soft

breathing & many other sounds. When I hear these noises I feel an

uncontrollable disgust & aggression towards the person making them &

often I am forced to leave to escape. If I stay feelings of despair isolation

& inability to cope overwhelm me. It hurts me to feel this way to the

people I care about most, most when they are doing nothing wrong & are

victims to my outburst or disappearances almost nightly at family dinners,

worse still is my sadness from not being able to hold my partner as we fall

asleep as the sound of her breathing is like a hurricane of anxiety in my mind.

It hurts me more to read stories of parents with 4S who are afraid to hear

their own children eat or cry as this is a trigger sound for them. I cant

imagine the pain that it would cause for a parent to feel so aggressive towards

a child they love so dearly, without any ability to control these feelings,

without any hope of a cure.

An online group dedicated to people with

this condition are desperately trying to contact you as 4S has yet to be

formally diagnosed & has received little attention from the medical

community. 4S deteriorates over time & is crippling to the majority of

peoples lives, forcing them away from social events, friends, family &

eventually society as a whole.

We beg for your support in bringing

awareness of this condition to the media in hopes that others with 4S

understand theyare not alone & research is instigated for a cure. I know

that you probably receive thousands of emails a day asking for help, but I know

in my heart that if you bring awareness of 4S to the world, you will give hope

to thousands if not millions of people who are living with this condition,

hope, that one day there will be a cure & one day we will be able to live a

normal life.

With Hope

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com]

On Behalf Of McKenna

Sent: Tuesday, 25 November 2008 6:59 PM

To: Soundsensitivity@ yahoogroups. com

Subject: RE: Just curious....a poll of sorts

Ah teach me to read ahead before

posting.

Hmmm in a rather bad state at the

moment, I have retreated to my bedroom as almost all sounds are getting to me.

I have noticed that when I enter these sates, my speech slurs somewhat, I

feel slow and generally cant think. Does anyone else get this???

I have set up a brainwave entertainment

track designed to make me wide awake and uplift my mood, in fact it should make

me very aware of everything, Im trying to rip myself out of this state.

Information as follows:

Session length 1 Hr

Ramp from 14.2 Mhz to 55mhz over 15

minutes, remaining at 55 mhz for the duration of the track no ramp down.

Entertainment amplitude phase 246.5 Sine

waveform

Intensity 63

Filtered from Trance music.

Information above for my own research

and if anyone else has any suggestions, the ramp is quick and is likely to give

me a headache.

On a side note i¢m getting thoroughly

annoyed with this email to Oprah, Im 54 characters over!!!!

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com] On Behalf Of a Pereira

Sent: Tuesday, 25 November 2008 5:37 PM

To: Soundsensitivity@ yahoogroups. com

Subject: Re: Just curious....a poll of sorts

andra,

Great

idea about creating the survey. Maybe you can create a draft of the

survey and send it to the group? Then everyone can add questions that they

think are important... .then once the final is approved by everyone it can be

individualy completed and stored.

From:

andra Ruiz <alexandrara@ yahoo.com>

To: Soundsensitivity@ yahoogroups. com

Sent: Tuesday, November 25, 2008 6:41:15 AM

Subject: Re: Just curious....a poll of sorts

Wow

Rich...my answers would have to be identical to yours...except for I don't know

where I first noticed my condition.

GREAT idea about the database...just wondering how we would be able to compile

all the information. Maybe there's some sort of " online survey "

that we can create...

I think they must have had me in mind when they created the term " control

freak " )

andra

From:

McKenna <r.mckennawestnet (DOT) com.au>

To: Soundsensitivity@ yahoogroups. com

Sent: Tuesday, November 25, 2008 2:30:42 PM

Subject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after

reading the post below, although we are all talking about this and making

progress imo, we are making a lot of connections here too but I am worried that

we are not recording these down to see the logical links. If I am incorrect

please let me know, but how would everyone feel about a database of information

being collected so that we can cross reference information we are getting over

the long term and see if there are any connections? ??

I had this idea that the database could

contain information such as some of the questions below, and also ranging to

ancestery, sex, weight diet and even moving into things like eye color and

other personality traits.

There is of course worries about privacy

etc etc and I am not sure how comfortable everyone is with this, or if it has

already been done, but I think we could make great progress if the information

were stored in a place that would allow cross referencing rather then only

through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I

was about 13-14

I am sure.

Crunching, gulping smacking lips knives

and forks on plates, scraping, coughing to some degree, soft breathing, gum

smacking, movement out of the corner of my eye, dogs licking paws dogs

drinking, sniffing, muffeled voices in another room, keyboar typing (on bad

days) sound of water being poured into a glass. Slurping, squishy food, ummm I

think thats it at the moment.

Depends on my mood at the time, there is

aparticular type of person and everyone here knows the type that I am talking

about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have

to leave, complete shut down in side, scared and sad, feeling lost and

hopeless, must make them stop! Ust want to be left alone in silence and

sometimes wishing I were deaf, wish it was over and always looking for a way

out, wishing I wasn¢t such a bother on my family and others around me, wishing

I could control.

Others have apologised, done the noise

more, confused, frustrated that I am angry, angry, moving away not

understanding and understanding.

Depends on my mood and how much sleep I

get but it ranges from Moderate to severe.

By the way, how many people here would

rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com]

On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity@ yahoogroups. com

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your " inside " reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 25, 2008

HERE ARE MY ANSWERS:

When did you first notice your 4s symptoms?

AS A CHILD

Are you sure of when they started or are you making a guess?

I'M PRETTY SURE

What sounds bother you?

SO MANY, HIGH FREQUENCY SOUNDS, KEYS, DISHES, CHIMES, SQUEALS, DISTINCT

S's & T's IN VOICES, PAPER, FEET SCUFFING, MANY MORE

Does any one person or group of people bother you more than others?

CERTAIN PEOPLE'S VOICES ARE MORE PAINFUL THAN OTHERS, IT REALLY IS WHAT

SOUND THE PERSON IS MAKING OR WHAT THEY ARE DOING THAT BOTHERS ME

What is your " inside " reaction?

HEADACHES, FEELING TWISTED UP

How do you actually react?

HIT MY HEAD, RUN AWAY, GET ANGRY AND FRUSTRATED, TRY TO HIDE HOW I'M

REACTING FROM THE PERSON(S)

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

DON'T BELIEVE ME, DON'T CARE, OCCASIONALLY UNDERSTANDING AND WILL STOP

MAKING THE NOISE

How would you rate your 4S? Mild, moderate, severe, profound?

PROFOUND

-Randall

November 25, 2008

Hi a,

If you have the time by all means, Im here to help if you need

anything, and btw, I think what you are doing for your sister is wonderful,

that must mean an incredible amount to her.

As for suggestions, there is some info on this web site:

http://www.soundsensitive.org/

But I am not sure how recent that information is on the % wise

for responses that is....???

There has been a lot of talk about race so that should be a

question, does anyone else in the family have it, age sex weight diet lifestyle

maybe even something as ridiculous as eye colour??? All of the below questions

too. There must be some other connection other then what we know.. hmmm maybe

include peoples jobs if they feel comfortable maybe we can tap into knowledge

outside of 4s to come up with a cure? Or more information to fix it. Maybe a

question about if people can feel when its going to be a bad or a good day for

them and what information their body is giving them, ie for me I can feel myself

slump my brain gets slow and almost stupid and I slur, thats only when its

going to be very very bad. Maybe if there was a trauma in persons life before

4s no dets or anything. Injusy if any to the head>??? Also what people have

done to try and get over it and the results of fixing it maybe out of ten? Hours

of sleep per night? Personality traits such as control freaks introverts

extroverts, I know there is a myers briggs type personality test maybe we are

all the same type? Maybe not.

Im am now just rambling sorry, maybe some ideas that can be adapted.

Im off to sleep, sweet dreams all and best of luck

Rich

From: Soundsensitivity

[mailto:Soundsensitivity ] On Behalf Of a Pereira

Sent: Tuesday, 25 November 2008 7:34 PM

To: Soundsensitivity

Subject: Re: Just curious....a poll of sorts

I took a look at this site and, in theory, it seems

straighforward and user friendly. I don't mind creating a sample survey

and sending it to the group for everyone's critique and suggestions. Rich

(or anyone else), if you are good with computer applications and would like to

take on the sample survey instead please let me know. As I mentioned in

my earlier emails, I do not suffer from 4S, my sister andra does. I

have joined to learn more about the disorder and help search

for solutions/treatments in any way that I can. Any thoughts?

Suggestions?

a

To: Soundsensitivity

Sent: Tuesday, November 25, 2008 7:42:59 AM

Subject: Re: Just curious....a poll of sorts

This

is great a...I actually just went in to see how we can set up a survey on

the surveymonkey link that Rich sent and it seems fairly easy and straight

forward. Just open an account (easy and free) and you can start making

your own survey. You can choose from different types of multiple choice

answers and so forth. Why don't you have a look and let us know what you

think.

We can put questions on there like the ones that Rich stated....having to do

with lifestyle, health, nutrition/diet, symptoms, phobias, family history, sex,

weight, physical and personality characteristics and so forth.

Let me know if you need any help!

andra

From: a Pereira <susana.pereira73@ yahoo.com>

To: Soundsensitivity@ yahoogroups. com

Sent: Tuesday, November 25, 2008 3:32:11 PM

Subject: Re: Just curious....a poll of sorts

Hi Rich,

You are absolutely right, I was thinking the same

thing..... Unless someone else has already started to take note I would

be more than happy to track back and create a data base with all the nuances

and specifics about 4S that you have all been sharing.

From: McKenna <r.mckennawestnet (DOT) com.au>

To: Soundsensitivity@ yahoogroups. com

Sent: Tuesday, November 25, 2008 6:30:42 AM

Subject: RE: Just curious....a poll of sorts

Hello All,

I was thinking last night, and after

reading the post below, although we are all talking about this and making

progress imo, we are making a lot of connections here too but I am worried that

we are not recording these down to see the logical links. If I am incorrect

please let me know, but how would everyone feel about a database of information

being collected so that we can cross reference information we are getting over

the long term and see if there are any connections? ??

I had this idea that the database could

contain information such as some of the questions below, and also ranging to

ancestery, sex, weight diet and even moving into things like eye color and

other personality traits.

There is of course worries about privacy

etc etc and I am not sure how comfortable everyone is with this, or if it has

already been done, but I think we could make great progress if the information

were stored in a place that would allow cross referencing rather then only

through emails? Your thoughts please???

In response to below:

I noticed my 4s in a movie cinema when I

was about 13-14

I am sure.

Crunching, gulping smacking lips knives

and forks on plates, scraping, coughing to some degree, soft breathing, gum

smacking, movement out of the corner of my eye, dogs licking paws dogs

drinking, sniffing, muffeled voices in another room, keyboar typing (on bad

days) sound of water being poured into a glass. Slurping, squishy food, ummm I

think thats it at the moment.

Depends on my mood at the time, there is

aparticular type of person and everyone here knows the type that I am talking

about that seems to have all of the above in one nice little package!

Anger aggression, disgust! Hartred, have

to leave, complete shut down in side, scared and sad, feeling lost and

hopeless, must make them stop! Ust want to be left alone in silence and

sometimes wishing I were deaf, wish it was over and always looking for a way

out, wishing I wasn¢t such a bother on my family and others around me, wishing

I could control.

Others have apologised, done the noise

more, confused, frustrated that I am angry, angry, moving away not

understanding and understanding.

Depends on my mood and how much sleep I

get but it ranges from Moderate to severe.

By the way, how many people here would

rate them selves a control freak ~not because~ of the 4S but naturally.?? ?

Kind Regards

Rich

From: Soundsensitivity@ yahoogroups. com

[mailto:Soundsensit ivity@yahoogroup s.com]

On Behalf Of andrealeigh4

Sent: Tuesday, 25 November 2008 5:15 AM

To: Soundsensitivity@ yahoogroups. com

Subject: Just curious....a poll of sorts

I am wondering a couple things about everyone. I thought it could be

interesting to see everyone's replies.

When did you first notice your 4s symptoms?

Are you sure of when they started or are you making a guess?

What sounds bother you?

Does any one person or group of people bother you more than others?

What is your " inside " reaction?

How do you actually react?

What are some reactions you've gotten from others when you've been

" annoyed " by their noises?

How would you rate your 4S? Mild, moderate, severe, profound?

November 25, 2008

That' great Rich!!! To know that you have had even just a short moment of improvement really gives me hope that we can all somehow get better.Your email was absolutely perfect and wonderfully written )andraTo: Soundsensitivity Sent: Tuesday,

November 25, 2008 5:36:50 PMSubject: RE: Just curious....a poll of sorts

I don¢t believe it, I don¢t know if it was a placebo,

if i wasn¢t as bad as I thought I was, if it was a multitude of other

factors or if it was the brainwave track, but.... I just managed to sit through

an entire dinner meal, with scrapping slurping, banging from knives and forks

and motor mouths, a lot of multi conversation talking and loud gulping, normally

my dodge zone in 1 minute!. It wasn¢t easy, and the noises were still...uncomfortable,

but that felt more a learned response, I actually did not feel the need to run

away and my anger was certainly down! I don¢t know if I should be very

happy or very confused. My head is rather sore, and I am rather irritable but at the

same time somewhat calm, not like my normal stress ball after a family dinner.... I will need quite a lot more testing to see if it was the high

level beta track that has helped, and if it is.... maybe this is a key to

something...maybe... I really hope it is because that means we might be able to

adapt something... I don¢t know if I should be letting myself get my

hopes up but... I want to this time. I want to hope. I have also sent a letter to Oprah, got it down to less then

2000 characters as it wouldn¢t seem to take 2000, here it is: Dear Oprah Im a 22 year old male who suffers from a condition called Soft