[I] RE: Re: FW: help with sound sensitivity

[Guest guest]

I think that would make sense, since she is the one who had contact

with him initially. If she would prefer to have someone else

coordinate it, and we get an experience volunteer to do such, it

would still be prudent to have her communicate this change to the

doctor. Since she got a response from him initially, it would be

wise to continue that line of communication between them so someone

else doesn't have to come in and start from scratch.

Another thought on the chat session as opposed to the teleconference:

a chat session would allow for everyone to participate without having

to worry about expending minutes on their cell phones or worrying

about potential long-distance fees. It would also allow for some of

us to worry less about scheduling around the chat session. I, for

one, may be able to log into a chat session at work whereas I would

not be able to do an extended phone conversation.

If anyone has any concerns with this course of action, please feel

free to express them! I don't mean to push my opinions on anyone;

I'm just trying to see how we can make this successful and beneficial

to as many people as possible.

> >

> > Did he already speak with Marsha?

> >

> > That's exciting that he seems to be genuinely interested in

> helping. I don't know how to coordinate a large conference

call.

> Maybe he could just speak with several people who have it.

> >

> > Whoever speaks with him needs to make sure you steer away

from

> anything he might use to attribute 4s to a psychological

problem.

> >

> > We need to make him see the commonalities of the onset and

symptoms.

> >

> > But most importantly, he is interested in the hereditary

component

> of 4s, so we need him to speak with people who have had

relative with

> it. I think that is one reason he is so interested in

possibly

> studying it.

> >

> > If he wants to talk to a parent who has it, he can call me.

I

> believe I put my phone number on my email to him. I'll send

you my

> phone number if you want to add it to a list.

> >

> > Thanks Sonya.

> >

> > I have Dr. Friedman on a prayer list for prayers that he

will open

> his mind and heart and want to study this condition.

> >

> > Kathy Howe

> > help with sound sensitivity

> >

> >

> > Dear Dr. Friedman,

> >

> > My name is Sonya and I am 38 years old woman who is well-

> accomplished, sociable and generally optimistic about life.

However

> I have a very debilitating and unusual problem--certain

sounds cause

> me great anguish and wreak havoc with my life. I ask that you

please

> read my story and consider conducting research and providing

possible

> solutions or therapies to help with this problem. My

explanation is

> long, but that also describes my lifelong struggle with this

problem!

> >

> > My sound problem has been with me for as long as I can

remember,

> so I do not know what it is like to live without it. I was

diagnosed

> with OCD when I was 15 years old, and while that diagnosis is

> certainly appropriate, it does not adequately explain my

problem with

> my " trigger sounds " such as breathing, humming, gum chewing,

muffled

> speech as several more very idiosyncratic and specific

sounds. Last

> November, I learned through an audiologist that what I have

might be

> better described as sensory defensiveness, and more recently

I

> discovered a Yahoo support group started by audiologist Dr.

Marsha

> for Selective Sound Sensitivity Syndrome (4S).

Finally I

> found a group that truly understands my problem. When I say I

cannot

> stand someone breathing loudly around me, my fellow 4S

sufferers

> understand that I am not merely annoyed by the sound, but

rather I

> experience mental anguish from it and that my reaction to

sounds has

> had a profound impact on every single aspect of my life and

every

> single relationship in my life--from neighbors, to family, to

> boyfriends, and most certainly in the workplace.

> >

> > Since I have joined the group, it seems like every week

there is

> a new parent that joins with the story about how their child

suddenly

> developed this problem. Although I developed the problem

before I

> can remember, I can relate to this because some of my

triggers came

> on over night. One day eating at the dinner table with my

family was

> no problem and then all of a sudden I could not stand the

breathing

> sounds my father made when he was eating. Reading about the

real

> life cases of children developing 4S/sensory defensiveness

suddenly

> as well as reading the similarly heart wrenching stories of

other

> adults whose stories mirror my own makes me feel a sense of

urgency

> about really addressing this problem directly and not just a

part of

> some other better know problem such as OCD or hyperacusis.

Sure I do

> have OCD, but it does not explain my sound problem. I

definitely do

> not have hyperacusis in that I am not overwhelmed by loud

sounds. In

> fact, I outright seek certain types of loud sounds. For

example,

> yesterday I went to a carnival (the Sun Prairie Corn

Festival)--loud

> music, neon lights, the bustle and hustle of people around me

was a

> wonderful sensory experience for me. I also enjoy the sound

of lawn

> mowers, leaf blowers and some types of construction machinery.

> >

> > Here are just a few examples of the impact for 4S on my

life,

> large and small:

> > a.. When I walk into any situation in which I will be

seated

> with other people, my first thought is to avoid being around

people

> who chew gum or who breath loudly.

> > b.. My number 1 concern when I get on an airplane is

whether or

> not people will be chewing gum.

> > c.. My ex-fiancé recently moved out--although this was a

> mutual decision, he sighted my inability to sleep in the same

room as

> him as one of his primary reasons that he thought the

engagement

> needed to end.

> > d.. Although ironically I have been commended and

recognized

> for my work in the area of health care quality measures, I

pay a huge

> emotional toll for being around my trigger sounds in the

workplace.

> My sound problem has caused HR issues and it has been very

traumatic

> pursuing accommodations for my disability. It feels like I am

> leading a double life in a sense that through my job I am

empowered

> to work with Wisconsin health plans on quality of care

issues, yet I

> cannot help myself in my own workplace in which I feel like a

> refugee.

> > e.. When I am talking on the phone at the office, I press

the

> receiver hard onto my left ear and I have my headphones

blasting with

> two kinds of music in my right ear. If the conversation goes

on too

> long, I get agitated with having to concentrate on blocking

the

> sounds and speaking to the person at the same time. If

someone comes

> to speak to me at my desk, I will plug at least one ear or

keep my

> headphones on one ear while speaking to them. Alternatively,

I will

> request to speak with them in a different location.

> > f.. I get very upset with my neighbor's air conditioner

which

> makes a loud hum and rattle sound. A couple of times in

recent

> weeks, I have come home from work with my nerves already

frazzled

> from my sound problems there only to be exposed to the

neighbors air

> conditioner. I had fits of crying and rage before I was

finally able

> to calm myself down.

> >

> > This problem seems to get worse with age. That has been my

> experience and I see evidence of this in the story of others

as

> well. One of the differences I have experienced in adulthood

that is

> different from my childhood experience, is that I experience

more

> anticipatory anxiety, anger and rage as an adult. As an adult

I also

> do a lot more planning on how to deal with sound situations

that may

> arise while as a child, my reactions were more in the moment.

My

> psychologist concurs that the original problem was not phobic

in

> nature, but rather that I have developed a secondary fear of

sounds

> that can be triggered by merely seeing someone chew gum.

Below are

> some examples of my response to trigger sounds as as child

and as an

> adult.

> >

> >

> > As a child my response would be to:

> > *plug my ears

> > *scream

> > *run away

> > *crack my knees

> > *hit my head

> > *cock my head from side to side and make a sound like a

donkey--

> this was a signal to my parents that I was hearing a sound

that I did

> not like

> >

> > As an adult, some of my responses include:

> > *avoidance/flee

> > *swearing

> > *internally tighten up--this is a very distressing feeling

> > *talk to myself and create my own noises such as typing

loudly

> > *on occasion, I have lost it and started slamming doors and

> kicking drawers shut

> >

> > Here are a few other noteworthy points of interest:

> > a.. Similar to other adults with 4S, I have been to a

multitude

> of doctors, specialists and mental health providers

throughout the

> course of my life for this problem. Awareness of this problem

is

> virtually non-existent. Some of the treatments I have

received have

> been very harmful. For example, Anafranil did not help by

sound

> problem nor my OCD and had very severe side effects--I lost a

lot of

> weight and fainted several times a week. Another flavor of

harmful

> treatment was when certain mental health professionals chose

to

> address my problem with sounds as a behavioral problem. That

just

> ended up making me more distrustful and may have contributed

to my

> secondary phobic response. I was a well behaved child and my

parents

> came to understand that my OCD and sound problem where not a

cry for

> attention or acting out or any other such explanation. For

the most

> part my interaction with the healthcare system has neither

been an

> efficient use of healthcare resources nor of much help to me.

I have

> found treatments such as psychotherapy to be useless.

> > b.. Recently I have had success with addressing some of my

OCD

> symptoms and dealing better with my 4S with cognitive

behavior

> therapy and some exposure therapy and yet this treatment has

not

> lessened my anguish from the trigger sounds. This leads me to

> believe even more strongly that there is something else going

on. I

> have demonstrated the ability to improve my OCD and yet my

sound

> sensitivity has not gotten better. There is evidence that I

am

> able to habituate in other parts of my life--even to sounds,

yet me

> trigger sounds continue to wreak havoc with my life. Examples

of

> habituation include:

> > a.. I have floaters in my eye and while I do notice them

> from time to time, I have adjusted well from the time I first

noticed

> them. One of my earliest symptoms of OCD was what we called

> my " attention " problem. When I was watching TV, I could not

stand to

> have anyone in my line of vision, even if they were off to

the

> side. Although I still notice these type of tendencies, I

have made

> great improvement in this area and it does not cause a

problem in my

> life.

> > a.. I am able to bare many sounds that would bother other

> people much better than the average person. I think that this

is

> because my trigger sounds are so difficult to deal with that

it makes

> other, not particularly pleasant sounds much easier to take.

For

> example on my most recent airplane flight there was a period

of time

> where I was relaxed because there was nobody chewing gum or

breathing

> loud around me. A baby started crying and screaming at the

top of

> his lungs. I was not bothered but could tell that other

people

> around me were. Again, I think this is an example of my

ability to

> habituate, so why am I not able to habituate to my trigger

sounds?

> > c.. I believe that there may be some genetic component to

this

> problem as both of my parents had certain sounds

sensitivities

> although no where near as severe as my own. However my father

backed

> out of buying a condo once after he had made an offer and it

had been

> accepted because one of the bedrooms had a mechanical rattle

sound,

> so there is evidence that his problem with sounds was still

> significant enough to impact his life.

> > d.. Like most others with 4S, I am not bothered by my own

> sounds. In fact I sometimes use my own sounds to mask other

people's

> sounds and I like the stimulation from certain types of

sounds that I

> make. For example, my own eating sounds can help mask the

eating

> sounds of others. At work, I like to type really loud and tap

on my

> headphones.

> > e.. As I eluded to above, there are some sounds that I

really

> love. Just as I think some sounds cause me an unusual degree

of

> anguish, other sounds cause me an unusual degree of

enjoyment. One

> of the things I miss about apartment living and there are not

many,

> is the base music sounds through the walls (as long as it

could be

> heard as music) that would would put me in the a relaxed lull-

-it had

> a really calming affect on my nervous system. Doesn't that

sound

> more neurological than psychological?

> > f.. I believe that trigger sounds can have a psychological

or

> physical cause but it is not the cause of the trigger that is

central

> to understanding why I continue to process and respond to

sounds the

> way I do. I have indications in my own life of each type of

> trigger. My one example of a sound problem that I had for

year that

> did go away was my intense dislike of hearing Arabic being

spoken

> when I was growing up. On the other hand the difference

between

> my " good bases sounds " from music through the walls and

my " bad base

> sounds " from TV through the walls does not lend itself well

to a

> psychological explanation. The point may be in the processing

and

> interpretation regardless of how the problem started. I am

aware of

> cases of 4S that have been triggered by diseases that attack

the

> nervous system such as Lyme disease.

> > g.. My exposure therapy involved attending a meditation

class

> and learning to live with with breathing sounds. To some

extent it

> has helped because I learn that I can bare some sounds even

though

> they cause me great distress, but I noticed an interesting

reaction

> that I have developed when I full expose myself without

plugging my

> ears or using ear plugs--I have developed an involuntary

twitch. My

> head jerks from right to left--it is a subtle movement, but I

cannot

> control it--like someone hitting your funny bone. I mention

it

> because I read that other people in the Yahoo group also have

> involuntary movements or sensations when they hear their

trigger

> sounds.

> > h.. There are some sound/situation combinations in which it

is

> enough for me to alter the sound or keep my eye on the source

of the

> sound in order to seek relief while there are other

sound/situation

> combinations in which even if I have logically blocked the

sounds

> from entering into my ear--my brain continues to search for

the

> sound. For example, the air conditioner of my neighbor is a

sound

> that I can deal with if I just tone it down using ear plugs

as

> opposed having the need to completely eliminated it. As far

as gum

> chewing goes context matters a lot. When walking around at

the

> carnival last night, I did not get distressed by seeing

people chew

> gum. I am walked around and will not get trapped by the

sound. When

> going to the health club it is more distressing to see

someone chew

> gum. I know that I would like to be on a piece of equipment

for a

> longer time, so I feel more trapped. I see them chomping away

and it

> is loud so I should not be able to hear them, but I my brain

is

> constantly go out there and trying to detect the sound. At

work--my

> headphones should block out the sound of the gum--but it is

the

> absolute worst in terms of feeling trapped. My brain is very

engaged

> in seeking out the sound and other sounds such as clicking or

> ruffling papers become more troublesome because they make by

brain

> work harder at trying to detect the offending sound. I now

listen to

> two kinds of music at the same time with my headphone. For

example I

> will listen to Opera and nature sounds at the same time. I

find that

> keeps my brain busier processing those sounds as opposed to

searching

> for the chewing gum sound. When I am talking to coworkers who

have a

> wad of gum in their mouth they speak it makes me very nervous

because

> I don't like their muffled speak.

> > As you can see, this has been a lifelong ordeal for me and

for

> others and that I have put a lot of thought into what is

going on and

> how myself and others could get better. I am definitely a

strong

> advocate of behavior therapy, but it cannot stop there. I

certainly

> have my opinions and theories about 4S/sensory defensiveness

as do

> many other 4S sufferers, however we need to start taking this

problem

> seriously and conducting research. We not only need help from

the

> medical community better understanding, defining and treating

this

> condition, but also in providing information to the community

at

> large. We need to raise awareness about this condition so

that all

> those who suffer from it can know that they are not alone and

so that

> the general public can begin to view this as a legitimate

problem.

> Even if you in the medical community cannot find a solution

to this

> complex problem right the way, at least people like me would

have a

> better shot at feeling less alien in this world if this

condition was

> better understood!

> >

> > I have posted my story to my website and plan to add

material

> regularly about this problem since it is my missions to raise

> awareness about this problem. I will write about my 4S and

other

> interests I have in life. I would like people to see that I

am much

> more than my sound problem and that I am a living breathing

human

> being with a dynamic life. I would like people who come to my

> website for other reasons, to better understand what it is to

have a

> hidden disability and that it is not always obvious why

people act in

> certain ways.

> > http://www.sonyasidky.com/4S-Sonya-Story.html

> >

> >

> >

> > I hope that you will choose to take an interest in this

problem.

> Please do not hesitate to contact me with any questions you

have.

> >

> > Thanks for your consideration,

> >

> > Sonya Sidky

> >

>