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

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StuckonZero

StuckonZero

Aging like a fine wine. ;-)

8 thoughts on “Unintended Consequences.”

  1. Wow, I’ve never heard (no pun intended) of this syndrome. I’m glad you told me about it because, being a whistler, I’ll try to be more sensitive about it if people glare at me. And I definitely won’t whistle around you!

    1. heh heh….good plan! My friend tells me that everyone has these same feelings, but some folks just hide them better. I’m not so sure. Being annoyed by a sound is different, to me, than wanting to strangle the person making it. I had never heard of it before today, but it is very interesting to me. And the weird thing — sometimes, I catch myself whistling. I sure wish this syndrome had been recognized while my mother was alive.

  2. Yes, I wish it had been explained back then, too. Mother was very affected by your reaction; she used to mention it to me from time to time. Her whistling kinda bothered me, too, but nothing like you described. Certain sounds send me into orbit, but man, you must have it Ba a a a a ad. Clearing throats, sniffing, and clicking pens make me get up and leave, so I do identify. I would bet there are many more out there who would be aghast if diagnosed. So, got any tunes you want me to whistle, ala Slim Whitman?

    1. I know it upset her, and I really regret that. I’m sure everyone thought I was just being difficult. It’s such a strong reaction that it sometimes scares me a bit — it feels like I’m off my rocker. Boy…whistling. Pure torture. Nice to know I’m not alone.

  3. Totally a real thing. A good friend of mine has it. She’s a therapist and she’s looked it up, although she called it “Sound Sensitivity.” She says it is related to frequency sensitivity. The offending sounds are usually on the higher-end of the frequency scale. Likely, Grandma’s whistling was at that *perfect* frequency to spur a reaction.
    One day this friend and I were driving to the beach with our kids all in the same car. Christian makes this weird noise whenever he is happy (I still haven’t figured out why) and he kept making it in the backseat throughout the drive. Not every second, but every 5 or 10 minutes.
    Apparently, it touched off my friend’s syndrome to the point where she pulled over and made Christian promise to not make that sound because it was affecting her to the point of not being able to drive. And this is a girl who is usually very mellow and permissive.
    So, although I don’t understand your syndrome, I know it’s real and I am sorry you have to deal with it.

    (But if you could write about the benefits you’ve noticed since getting your H.As I would love to read it!)

    1. Wow about your friend — and thanks for the support! It is very real to me, that’s for sure. I found that although hyperacusis and misophonia are similar, what seems to distinguish them is that the former has to do with sounds of a certain frequency or range as well as volume, but the latter is usually soft sounds (sometimes called Soft Sound Sensitivity) but can be any volume, and visual stimuli are included. The links were very interesting to read.
      Yes, I will finish the original post; I hope there’s some help out there for you, too!

  4. Currently, the cicada are driving me to drink!! I hate to see summer go, but am anxious for them all to die off so their incessant buzzing will be gone. During a normal summer they don’t bother me, but this is the year of the Magicicada, so their numbers are greater. Makes me irritable and anxiety ridden.

  5. I’ve only seen cicadas on tv. They freak me out on television, so I’m thinking I don’t need to experience the reality of that. Without my hearing devices, I probably wouldn’t be able to hear them very well — or I might think they were my tinnitus and nobody else could hear them.
    But I know what you mean about driving one to drink! A former coworker of mine, a teetotaler, used to joke during stressful days that she wanted ‘to take up heavy drinking.’ Not just drinking, but heavy drinking. Hear, hear!! 😉

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