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

[Guest guest]

I agree as well. I would suggest that we offer the idea of the chat

in an attempt to better accomodate him and help him retain the

information presented. We should let him know that we are willing to

do either/or, whatever his preference is. However, I think he will

end up getting more useable information, and in a more organized

manner with less worry about people talking over each other, if we

were to try the chat.

Ultimately, it is up to his preference. But I think we would be

foolish to not offer alternatives to a teleconference that may end up

working better. I don't think the mere mention of a chat forum will

turn him off, especially if we're just presenting it as a possible

solution to very probable issues that may arise with a

teleconference, and if we make it clear that whatever her prefers

will be what we go for. If he is more comfortable with us setting up

a teleconference, that's what we'll do.

> > > >

> > > > 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

> > > >

> > >

> >

>