RE: FW: help with sound sensitivity

[Guest guest]

Sonya,

Your story is great. Thanks for emailing it.

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Sonya SidkySent: Sunday, August 17, 2008 5:10 PMTo: Soundsensitivity Subject: FW: help with sound sensitivity

Hello All,

I sent the letter below to Dr. Friedman and a similar one to Dr.. I don't think I know the meaning of keeping it short when I write a letter, but then again as I pointed out in my letter below, my lifelong struggle with this has been long!

Thanks Kathy for organizing this effort!

Sonya

-----Original Message-----From: Sonya Sidky [mailto:sidkycharter (DOT) net]Sent: Sunday, August 17, 2008 2:54 PMTo: rfriedmanhei (DOT) orgSubject: 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:

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.

My number 1 concern when I get on an airplane is whether or not people will be chewing gum.

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.

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.

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.

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:

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.

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:

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.

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?

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.

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.

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?

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.

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.

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