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I FEEL VINDICATED!!



As many frequent readers of this blog are aware, I’ve more or less diarized my experience with rare neurological deafness diseases: SSNHL and hyperacusis since my seizure during a final job interview on 2/17/2011. Even though I was in perfect health, a neuron from my inner ear died. The result is a quirky deafness where sound is my enemy and I suffer from tinnitus, vertigo, imbalance and basically the end of my life as I knew it.

Miraculously, I survived to celebrate the 3rd year of SSNHL and hyperacusis. This is something I’m proud of, especially since there’s a high suicide rate among people with hyperacusis. I believe it may have something to do with the fact that relatively few doctors ever heard of hyperacusis and treat patients as if they’re mentally unbalanced, stressed out, post-menopausal hysterics.

If it weren’t for the medication I recently take (experimental as to effectiveness), I wouldn’t be able to leave the house at all. I was pretty much a shut-in for 2 1/2 years. Only my closest friends understood what I have because they witnessed firsthand how I react to sound.

Everyone else, though, thought I was FULL OF SHIT. Including my ENTs.

I wrote ad nauseum in my other blog posts about what I underwent so I won’t bore you, dear Reader, to death. However, someone sent me the article below about hyperacusis sufferers. The people in the article got their hyperacusis through noise abuse unlike me who got it through a disease. But I’m grateful that ABC TV showed it on their 20/20 program. Something I never saw as the sound from tv annoys the crap outta me.

Suddenly, people have contacted me with the underlying subtext: You’re NOT FULL OF SHIT!

Well, fuck all of you!! I never lied about what I had. And I’m NOT FULL OF SHIT!

Still, *sigh* I feel vindicated.





Hyperacusis Diary: A Day in NYC When Every Sound Is Painful

By ABC News
Feb 4, 2014 10:55am

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Courtesy of Joyce Cohen
By JOYCE COHEN
Writer Joyce Cohen and her husband Ben live in New York City, one of the noisiest cities in the world. But loud sounds are torture to them, because they suffer from hyperacusis, a condition that causes terrible and often unbearable pain in the ear.  To cope with the noise, Cohen wears industrial-size earmuffs, and her husband can barely leave their small apartment. Cohen described what a typical day in the city is like for her.
The usually-quiet cat is meowing. Those high-pitched meows once felt like needles piercing my eardrums. Maybe she’s sad because she so rarely gets to play with her favorite toy, a rattly pink ball. She likes the rattle, but I don’t.
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Joyce Cohen
Roof construction has been antagonizing the neighborhood all week. I walk in the other direction.
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Courtesy of Joyce Cohen
The beeps and bangs penetrate our double-paned soundproof windows, but in the bedroom the noise is dulled to a tolerable level by an acoustical quilt.
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Courtesy of Joyce Cohen
Snack time! At 16 Handles, the frozen yogurt place, the music is always unbearably loud, but they turn it down when I ask.
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Courtesy of Joyce Cohen
Fortified, I head to Trader Joe’s. This saxophone player is often on the sidewalk. I feel like a horrible curmudgeon for complaining about street musicians! I proffer a guilt donation and rush inside.
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Courtesy of Joyce Cohen
Trader Joe’s has a funicular-like contraption to move shopping carts between floors. It squeaks! The checkout line is endless. I leave, because I can’t stand the bell that summons the staff.
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Courtesy of Joyce Cohen
Instead, I go to Fairway, a few blocks away. The checkout beeps are inescapable but tolerable.
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Courtesy of Joyce Cohen
I pass two police cars and keep my distance. The New York Police Department has unveiled the Rumbler siren, with a special low frequency designed to penetrate your bones and damage your ears.
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Courtesy of Joyce Cohen
I come home with lemon ices, which soften after a few seconds in the microwave. We open the door before the timer ticks down, lest we be forced to endure five maddeningly unnecessary beeps.
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Courtesy of Joyce Cohen
My husband, Ben, likes to eat icy things because they soothe his ears. It’s odd that he feels the cold in his ears as much as in his throat. We’ll never find out why, but something deep inside is seriously wrong.
Watch Joyce Cohen’s full story on ABC News’ “20/20″ on Friday, Feb. 7, at 10 p.m. ET
For more information about hyperacusis:
hyperacusisresearch.org – Nonprofit dedicated to stopping noise-induced pain.
hyperacusis.net – General information about hyperacusis and sound sensitivity.
hyperacusisearpain.com – Web forum for severe cases of hyperacusis and noise-induced pain.
facebook.com/groups/2414964219/ – “Hyperacusis Sufferers” Facebook group for chat and support.

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