Sunday, September 14, 2008

My Condition

Dear Family (and my close friends through the years),

I know many of you have had to live with me and my little condition throughout the years. My Grandmother had the same problem too. I think some of my siblings have it but haven't admitted to it. But I have finally found after years of searching that I actually have a condition/ syndrome that many thousands of others struggle with every day as well! Whew!

Here is what I have: Selective Sound Sensitivity Syndrome

What is Selective Sound Sensitivity Syndrome or "4S"?

An intense and immediate emotional and physiological reaction (possibly rage, frustration, sadness, or panic) upon hearing certain sounds - most prominently noises associated with oral functions such as eating, breathing, chewing or other noises such as typing sounds or pencils scratching-are the defining symptoms of a little known and poorly understood condition called "Selective Sound Sensitivity Syndrome" or "4S".

Onset is typically around the time of puberty and appears to persist and in some cases, trigger noises expand, as time passes. Reactions can dominate lifestyle and occupational choices, lead to social isolation or psychological difficulties.

There appears to be evidence of a genetic component as the condition appears in family members. A certain percentage of people with 4S have also demonstrated signs of Obsessive Compulsive Disorder, and has been also associated with other pervasive conditions such as the Autism Spectrum. However, the vast majority of people with 4S do not appear to have other pervasive or obviously identifiable disorder.

This syndrome was first recognized by audiologist Dr. Marsha Johnson in 2002. Since that time, there has been no known research conducted by the scientific community, and to date there is no known cure. Medical and psychological therapies have included the use of medicine to address the secondary symptoms of anxiety, depression, or other symptoms, counseling to address the social and personal difficulties associated with the symptoms, alternative therapies including acupuncture, hypnosis, or natural remedies. To date, a single effective therapy has not been discovered.


Symptoms

1) Onset is generally early adolescence, ages 7-10.
2) Current empirical evidence suggests that the disorder is genetic, i.e., there is a genetic predisposition
3) It is likely that the disorder is a physiological dysfunction of (presently unknown) brain activity. Much like OCD (obsessive-compulsion disorder), it might be a information processing dysfunction.
4) The predisposition may or may not be triggered by an early traumatic event
5) Both males and females are afflicted
6) A key characteristic of 4s is a rage, anxiety, frustration reaction to eating/chewing sounds.
7) Strangers can trigger the reactions, although often there significant others-- parents, siblings, or spouses- are the key triggers.

Auditory triggers include: Gum chewing, Rushing, running, or trickling water. sniffling, Heat vents and air conditioners. Amplified whispers. Flip flops or click clacking shoes. Dogs barking. Paper shuffling

Visual triggers include: Leg kicking. Finger pointing. Hands near face, Hands in general, gesturing or fluttering about, and long fingernails. Someone pointing at things

To learn more click here.

It is a very frustrating thing to live with especially when all of these noises are normal functions of living (like Garth says, "My very exsistance bothers you") however, it is a reality that I face. I noticed it for the most part in my early teens. My family would joke about it and I tried everything to make it better. They loved to bring me my dad's ear protectors (those big noise reducing things used for hunting) for me to wear at dinner. Although those did work, I looked a bit funny. Nothing, besides removing myself from the sound, made things tolerable.

I always feel bad about it though. I don't want to eat alone or have to check who is eating popcorn when I walk into the movies but most importantly I don't like making those I love around me feel my frustration with something they are doing that is perfectly normal.

Sounding off...

5 comments:

Anonymous said...

I am sorry to hear about your condition. I have known you had it for awhile. I must have been smacking in your presence. *grin*
I thought it was some kind of "sensory integration disorder" I think I have it a bit as well and it comes and goes with my hormones. (another lovely thing we have to endure) Hey, we all have something. It is just good to know it has a name.

Angie said...

4S's not like the 4R's.... ha ha ha. Heather-it sounds horrible! That would drive me insane. Thank goodness I don't have it or else Austin's cough would drive me looney.

amyburb said...

I hear ya Heather! I find that the condition is greatly amplified if the offending sounds occur when I am a) trying to nap, or b) very tired. Maybe I don't have it. Maybe I'm just an ogre.

fam stories said...

Wow, I think I have this condition! I cannot stand the sound of people chewing, it makes me want to pull my hair out. Especially my husband, I love everything else about him, but the sound of lips smacking drives me crazy! I can definitely relate, I must have this too! What we have to do to learn to cope as normal people! Just kiddin' of course!

Cynthia

Trisha said...

You would always bug me about eating my food too loud when I was little...now I know why! Also - while I was cleaning your teeth...you hated the noises there too. Anyways - glad to know there's a condition and that it's not just a personal issue! :)