August 16, 2008

4S: Sonya’s Story

This article is an edited version of my 7/24/2008 post to the YAHOO Sound Sensitivity Support Group . For more information, please visit the Sound Sensitivity website.

Hello all,

My name is Sonya and I am new to this group, but hardly new to living with 4S. I am 38 years old and live in Madison Wisconsin. I have had this problem my whole life--before age 6. In fact I believe that I have home movies that show me yanking on my ear as young as two years old. I am very grateful that this group exists and I am committed to providing information and support and look forward to receiving it as well:) From reading your emails for the last few days, taking the polls, and reading some of the other information on the site, I know I am in the right place!!!

I was diagnosed with OCD when I was 15 years old and do still feel that was an appropriate diagnosis, however the 4S is clearly dominate. I agree with the sentiment that you do not simply find noises irritating, but rather this problem is debilitating at times and profoundly affects every aspect of your life. I always knew that my OCD diagnosis did not sufficiently describe what it is that I experience.

As a child when I heard my sound triggers (breathing, gum chewing and humming) I would plug my ears, scream, crack my knees or run away. I also had this ritual of yanking my ear, cocking my head and making a sound like a donkey to let my parents know that I was hearing a sound that I could not stand. The dinner table was a challenge.

As an adult I have become more obsessive about sound and in more recent years my triggers set off anger and rage. I have judgmental thoughts about why people chew gum or fail to fix any breathing related problems that they have. It is kind of sad--if I am near someone in a meeting who is breathing loud or whistling through their nose, I actually clear my own nose and hope that they do the same so that I can experience a moment of relief before they go back to their pattern.

Like I am sure is the case for all of you, I could write a book on my experiences and I probably will some day, but for now I want to share a few tidbits so you can get a sense for how this has played out for me.

Last November was a pivotal time for me--I went to an audiologist who by coincidence had a patient with a very similar story. He provided each of us with the contact information for the other. I did not have the correct spelling of her name and was not able to reach her by phone--so I googled her to get more complete information. I got the correct spelling of her name and saw her picture on the web. I believe it was the second session of my meditation class that I sensed that she was there. I could not wait for the attendance sheet to come around to verify my feeling. Sure enough it was her--so I introduced myself and after the meditation class we exchanged stories. It blew both of our minds--because neither of us ever got to talk to another human being on this planet with such a similar experience before that day. Sure, I had talked to other people with OCD and could relate to many things, but nobody had my problem.

As you may have guessed, I was not just signed up to take the meditation class for the normal reasons someone might have to do so--learn to relax etc. The class was full blown exposure therapy. It never fails--there is at LEAST one breather in every group meditation situation. I had taken the meditation class before, but that was with earplugs and I stayed clear across the room from everyone else. This time we were in a small room and I did not bring earplugs. The first class was so hard--I was crying and twitching almost the whole time. Yes there was a super breather there--by the end I was able to calm myself.

During the second class before I knew for sure that this woman was in fact the one that I had the contact information for, just seeing her with her ear muffs on and sensing that it was her made me feel that I was not alone. From my friend, I learned that our problem was called sensory defensiveness: http://en.wikipedia.org/wiki/Sensory_defensiveness. We continue to be good friends and we have recently decided to work through "Cognitive Behavior Therapy for Dummies" together and apply the concepts to our sound problems.

At that time, I was also seeing a young psychologist who was brilliant. Her specially was OCD and she knew nothing about sensory defensiveness, but she was great at asking the right questions and getting me started with cognitive behavior therapy. Regardless of where the cause is physical, physiological, psychological (I think that there are many causes), CBT can be very helpful. As a result of finally working with someone competent and also taking on exposure therapy, I would say I have made improvements that I never thought were possible before. The trick is not to give yourself an exposure situation that would be too hard to bare, but rather keep it a 60 out of 100. As it becomes easier, yesterday's 80 may become today's 60.

Unfortunately, she moved to the East Coast in December. My new psychologist is good in different ways--he has been around a lot longer so at least he knows what sensory defensiveness is and was even able to tell me a story of someone who had a severe case of it suddenly triggered by Lyme disease. I believe that CBT has made me less obsessive (the OCD had a bad interaction with the sound problem) and has allowed me to bare sounds better in situations in which I am still in control, however I continue to have MAJOR issues with situations that I feel boxed in. I am most territorial about places in which I feel trapped with the sounds such as at home...and yes..sigh...at the fricken office.

The Office--yikes, this is a book in itself. [Note that I deleted a long explanation of my problems with 4S in the workplace in order to protect the guilty and the innocent:)].

What I learned from CBT is that I can bare it. I am fine with dealing with very uncomfortable feelings outside of the workplace such as in meditation, but I do not want to deal with it when I am trying to get my work done. I am now using earplugs and headphones. So in a way, I am doing much better, but in another way my box is tightening at work. Suggestions are welcome!

OK-I have gone on long enough--I just want to mention a few more things:

*I have sounds like that really love that are super relaxing to me. Examples include crowds of people, certain base music through the wall--if I can hear it as music and lawn mowers in the background. Does anyone else have sounds that they response to very positively? Perhaps I should take a poll on this.

*I believe that the cause of this is not purely psychological, but it develops into more of a phobia because of earlier bad experience with sound. I definitely wanted to mention my one example of a sound problem that I completely got over for the benefit of a fellow newbie who mentioned her issue with her mother speaking German. My parents are from Egypt and I grew up hearing my mother and father speaking in Arabic in the house--yes in very angry tones much of the time, so you know where I am going with this. One of the things that they would fight about is having this Egyptian family over for dinner--my mother, brother and I did not like them because the kids were rough and we perceived them as imposing. Well my father always won that battle and they came over. As I got older, I also felt self-conscious about being from a different culture than my friends, so I one day--I believe rather suddenly, realized that I could not stand the sound of Arabic. When we had guests over, I would plug my ears right there sitting in the living room with them if they were speaking Arabic. My parents could not speak Arabic with me around. That lasted for years.

When I was 17 my parents split up and I actually got more interested in Egypt and Arabic stopped bothering me--I even took Arabic classes and visited Egypt when I was in my 20s. I hold on to this as an example of a sound in which I can trace a psychological cause and as an example that it is possible to get over this. But not all my sound issues can be traced to a social or psychological cause--for example neighbors could be blasted good base music and I love that sound or they could be blasting their TV which I would hate. Both could be considered equally inconsiderate, but I love one and hate the other.

*A final note on medication—[I am not a doctor, nor am I making any recommendations—I am merely sharing my experience with medications and supplements]. I now take a low dose of 5-HTP and ST John's Wort everyday--they balance each other out since 5-HTP tends to jack me up and ST John's Wort calms me down. They do not directly help me with 4S, but they stabilize my mood so that I bounce back more easily from bad episodes that lead to bad moods. My past history with prescribed medications such as Anafranil and Prozac has not been good.

Six years ago, I went back for a second visit to the psychiatrist who wrote me a note for work place accommodations for my disability, he told me that he would not work with me unless I went on Zoloft or another medication. I wanted to pursue having my brain scanned and was not interested in taking medications. He was very rude about it and we actually engaged in a stare down. 10 minutes into my appointment I got up and left. I am not willing to work with someone who will only consider treating me with medication--I have my reasons for not wanting to go that route, although I won't shut the door to anything. I am very interested in the work of Dr. Daniel Amen and his work with brain scans.

OK--that is enough for now--sorry for going on and on. I should go to sleep down so that I can get up early and have some quiet time at work before others arrive!

Sonya