Unintended Consequences.

I started to write a post about how my life with hearing devices is going (and I was on a roll) when I looked something up online that pointed me in a slightly different, but more interesting, direction…

While researching a condition called Hyperacusis, where a sensitivity to certain sounds (also called a lowered Loudness Discomfort Level, or LDL) causes discomfort or pain, I discovered something:  I have a set of symptoms that correspond to a recently discovered (well, around 2000 or so) neurological disorder called Misophonia, or Selective Sound Sensitivity Syndrome (4S).  I’ve had these symptoms for many years – so long that I can no longer recall a time I didn’t experience them.  When I hear certain sounds, I get an immediate, irrational, extreme fight-or-flight reaction: rage, panic, severe anxiety, hate, and disgust…over something as simple as someone whistling or clicking a pen.  Sometimes even visual stimuli can cause the same reaction as auditory triggers.

While we all have certain sounds that bother us, this isn’t like that.  This is a reflex; I can’t stop it from happening, nor can I control it.  My stomach tightens, my heart pounds, I feel provoked to fist-shaking anger, and I cannot ignore the sound.  It is so distracting to me that it becomes my sole focus.  My best bet would be to avoid the stimuli (‘triggers’) that cause the problem, but that is not always possible; in fact, it is rarely possible, especially in a work or social environment.  

Every day is an opportunity for trigger sounds, in every environment.  I go to a meeting, and someone is absentmindedly clicking his pen.  I go to the store, and the teenager in front of me in line is snapping her gum.  I go to the movie theater, and the people behind me drive me crazy with the wrapper on their snacks.  As much as I try to keep my emotion in check when it happens, I usually fail miserably and end up glaring at the person making the sound.  Most of the time, the person doesn’t even realize they’re doing it and has no way of knowing how violently it affects me. I feel guilty and embarrassed to have such strong reactions to such innocuous noises, and I know that it makes me seem cranky or bitchy, but I can’t help it.  

When I was young, my mother’s whistling spurred me to inexplicable anger every time I heard it – it was as if she had provoked me to fight.  She couldn’t understand it, and I couldn’t explain it. Whistling was something my very musical mother truly enjoyed, and she did it without thinking.  If I could, I’d go somewhere else, but that wasn’t always possible.  She tried to comply when I’d ask (or angrily tell) her to stop, but it made no sense.  To this day, I loathe the sound of whistling.  Likewise, the sound of chewing gum, especially with ‘snapping’ or ‘cracking’ noises, sends me into orbit; for that reason, I have always told my kids that if they have gum, I don’t want to see it or hear it.  

Through my (limited) online research, I discovered that I am not alone in this affliction. While it is not an official mental disorder, it is a defined set of symptoms and has been suggested for classification as a discrete psychiatric disorder in the Obsessive-Compulsive Disorder (OCD) spectrum, for the purpose of official diagnoses and treatments as well as better recognition and research by the professional medical community.  It was first identified in the research and treatment of tinnitus.  It is neither a result nor factor in hearing loss; rather, it seems to relate to the limbic system, the structure of the brain that controls emotion and behavior.  A small number of studies and reviews have been conducted, but research seems to suggest that misophonia may be a result of dysfunction in the same cortices of the brain where Tourette’s is also indicated.  There is also data to suggest it might be a form of Synesthesia, a neurological condition where stimulus to one sense gets not only the correct response in that sense, but a simultaneous reaction in another sense; for example, some people ‘hear’ colors or ‘taste’ sounds.

I am thrilled that there is a name for what I have suffered with for most of my life.  I don’t know where it came from or whether I will ever find relief, but it is good to know that my wildly disproportionate reaction to certain sounds is not a result of me being unreasonable and bitchy.  It is not because I am in a bad mood.  It is not because I am controlling, selfish, angry, judgmental, or annoying — although I might well be all of those, they are not the reasons why I might throw you out the window if you decide to chew ice or crack peanuts next to me.

Just sayin’.

 

photo credit timparkinson

Part III – Lend Me a Hand.

new glasses
My new specs. Stylin’!

My eyesight is poor; I have one myopic (near-sighted) and one hyperopic (far-sighted) eye.  I’ve been wearing glasses since I was 7 years old, and bifocals since age 35.  Nobody makes fun of me for wearing glasses, nor should they; it is nothing to be embarrassed about.  Before I had my hips replaced, I used a cane to get around.  Nobody made fun of me for that, either; they recognized that I had a need for it, and that was that.  No shame necessary.

Yes, that's me.  That zipper is on my jeans.  ;-)
yes, that’s me.

But because of the stigma attached to hearing loss, people won’t admit they need help.  Often the perception is that wearing a hearing aid makes you appear less intelligent.  Hearing aids are assumed to be for old or disabled people, and that stigma is a very real reason that a lot of hearing loss goes undiagnosed and untreated.  It didn’t help that older hearing devices were large and bulky; people did not want to wear them because they were ugly and awkward. 

The irony is, though, that untreated hearing loss is far more noticeable than today’s hearing devices.  Chances are good that you have chatted with a person wearing hearing instruments and never noticed them.  On the other hand, constantly asking someone to repeat what they said, turning the volume up on the radio and TV, and speaking loudly are tell-tale signs of hearing loss. 

Sufferers struggle on a daily basis to hear and understand their environment; it can be exhausting and socially isolating.  The hearing-impaired person feels frustrated, angry, defeated, embarrassed and ridiculed.  Eventually, many drop out of life, in a way.  They stop trying and withdraw, because that is easier.  As for me, I resigned myself to a lifetime of permanent hearing loss.

A dear friend of mine has a rare gene mutation that causes, among other things, eventual deafness.  She also attends a lot of concerts and shows, and had worked for many years in an industrial environment.  She had been having difficulty when more than one person was talking or where background noise like television would mask the softer sounds of conversation, just like me. She got hearing aids, and she told me she loved them. 

Even after she told me that, I rationalized that her case was different, and my hearing loss was untreatable, because that’s what I had been told as a child.  It wasn’t until Mr. Stuck talked candidly to me about my hearing – telling me that even my sons and my friends were noticing that it was getting worse – that I agreed to go see an audiologist again.  I warned the Mr. that it would probably be a waste of time, but I would go.

Continued in Part IV...

photo credit Ephemeral Scraps

Part I – Listen Up!

The phenomenal Helen Keller in 1948.

Blindness separates us from things, but deafness separates us from people.
Helen Keller

My life changed last week, in a big way.   I’ll tell you how, shortly.

First off, some background: as a child, I suffered from frequent ear infections.  It seemed that every cough, wheeze, or sneeze heralded a virus that ended up lodged deeply and aching in my middle ear, where my only relief was couch time with glycerin drops and a heating pad.  I spent a lot of time on that couch.  During that time, I realized that I always had a ringing or buzzing in my ears that nobody could hear but me.  My father had it, too, and he taught me the name for it: tinnitus.  When my elementary school administered hearing tests to the students, I was sent home with a note to my parents, encouraging them to take me to a doctor for further examination.

I remember having the hearing test with the booth and the headphones and the tones of varying range and volume.  When I came out, the doctor showed me what he called my ‘cookie-bite’ hearing loss: normal hearing at the low and high ends of the spectrum, but a deep U-shape curve in the middle, demonstrating mid-range hearing problems.  The mid-range is where conversation takes place.  He explained to me and my parents that I had ‘nerve damage’ hearing loss, and he said there was nothing that could be done about it.

Over time, I got used to not hearing what others heard, and I tried to become a better listener to compensate.  I would sit at the front of class in school and take copious notes.  I tried to focus closely on what people said, and it helped a lot if I could see their faces.  I often asked people to repeat what they had said, or I would ask a person beside me to relay the information.  Before long, it was second nature to me to compensate for my bad ears.

Fast forward to a little more than ten years ago.  I was sitting at my desk at home when suddenly it felt like someone had come up behind me and tipped my chair backward.  I called out to my husband and clung to my desk for dear life before realizing I wasn’t tipping over and there wasn’t anyone behind me. 

Mr. Stuck came to help me out of my chair, and I soon realized that my balance was gone, my vision was distorted, and the room felt like it had gone sideways.  Any movement of my head caused a swell of nausea; I told him to take me to the bathroom in case I had to throw up.  Fortunately, that didn’t happen, but I sat on the bathroom floor against the wall for half an hour, trying to figure out what had just happened to me.  Mr. Stuck put me to bed, where the vertigo eventually calmed down. 

I went to the doctor and after several different tests was diagnosed with Meniere’s Disease (MD).  Meniere’s is a disorder of the inner ear, characterized by vertigo, ringing in the ears, a feeling of ‘fullness’ in the ear, and progressive, intermittent hearing loss.  It can be treatable, but is not curable.  I noticed that when I had a vertigo episode, it seemed as though my ears were stuffed with cotton.  I read everything about MD that I could get my hands on; all of it said the same thing: most sufferers will experience intermittent temporary hearing loss, but for some, the loss would be permanent.  Great — just great.

To be continued in Part II

photo credit uppityrib