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

[Guest guest]

This is incredible - we've got someones' ear. I think we should

grab the phone call he's offering: Dr. Friedman may be too busy or

immediately disinterested for internet chat until he sees what we

represent. I am 100% up for participating in a phone call. I too

write better than I speak but I have been a corporate call center

trainer (amongst other things) and am really good on the phone -

better than in person. I have been treated psychologically

extensively for this condition and am now working on adjusting my

brain waves which seems to be helping. THIS IS NOT a psych

disorder. I am too old to know how to set up a conference call.

Maybe someone could set it up and Sonya could invite me and who else

to be in on it? Someone PLEASE say yes.

Adah asiganoff@... (contact me for phone numbers)

> > >

> > > 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

> > >

> >

>