On the Quest for Silence: Living with Hyperacusis
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Tina Fineberg(NEW YORK) — For Joyce Cohen and Ben, a constant in their relationship has been the quest for silence.
Before their first date, New York City-based writer Cohen says, “I canvassed the neighborhood for a carpeted restaurant, and we went to dinner very, very early.” At their wedding seven months later, “There was no music,” says Cohen. “And we had paper plates.”
They met on an Internet support group for people who suffer from an auditory condition called hyperacusis. People with hyperacusis cannot tolerate levels of everyday noise without discomfort, and in severe cases, there is excruciating, debilitating pain.
Cohen wears industrial grade ear protection she everywhere she goes. “There are times if I’m out in my block in the middle of the night, it’s very quiet, I might take them off” she says. “But typically, it’s too hazardous.”
Cohen first went public with her condition in an article on Buzzfeed titled “Noise Kills” in which she described hyperacusis as “the opposite of deafness” or “an allergy to noise.” For her, everyday noises — from silverware clanking to high-pitched voices — can cause terrible pain.
Cohen says her hyperacusis developed after prolonged exposure to a loud ventilation system.
“I felt a wave of pressure descend upon my head, and I knew something terrible had happened but didn’t know what,” Cohen describes. “ I felt as though my entire head was being crushed. “
Meltzer blames decades of attending loud concerts for setting the stage for his condition. But he says the ultimate trigger seemed innocuous — an office printer.
“It was running eight hours a day, relatively close to me. And it was very high pitched, and squeaky,” says Meltzer. “One day, I woke up, and everything was a hundred times louder. A car horn honk just sent unbelievable pain, shooting through my ears.“
“There are clearly many, many people who suffer from this. And their descriptions are all remarkably similar,” says Dr. Charlie Liberman, an expert in auditory neuroscience at Harvard Medical College and Massachusetts Eye and Ear Infirmary.
Although it is unknown how many people live with this condition, Dr. Liberman believes the numbers seem to be rising. “It’s very clear that we’re living in a noisier and noisier world, and people are exposing themselves to more and more noisy environments,” he says. “And so the odds of it happening are, are certainly going to go up, because of that.”
Liberman is careful to point out that he is not an expert in hyperacusis. His mission is to warn people about the risks of dangerous noise exposure — which can lead to hearing loss, tinnitus, which is the ringing of the ears, or hyperacusis.
While some people with milder forms of hyperacusis report improvement using tinnitus retraining therapy, Cohen and Meltzer say they have not had any success with available treatments. Cohen says years ensconced in a quiet apartment avoiding loud sounds has been the secret to her improvement. While her ears never feel normal, her husband’s situation is much more dire.
Over time, Meltzer’s ears have become too damaged to wear ear protection, leaving him defenseless against loud noises. Meltzer regrets following what he now calls “bad advice” from some medical professionals who told him not to overprotect his ears, in an effort to prevent him from becoming “phobic” about noise. “I wish I had done what Joyce did, and protected my ears more,” says Meltzer.
Meltzer rarely leaves his apartment — and his biggest fear is the new Rumbler siren, which he describes as “devastating.” Cohen says the special low-frequency penetrates their soundproof windows and her protective earmuffs. “The Rumbler is driving us out of town,” says Meltzer.
Byran Pollard, an electrical engineer who developed hyperacusis after exposure to a noisy wood chipper, hopes to encourage research for what he deems a “rare and misunderstood” condition. He founded a nonprofit, Hypercusis Research, designed as a bridge between patients and researchers.
Meltzer has started his own online support group, Hypercusis Ear Pain, for people with hyperacusis, dedicated to the memories of two young musicians who committed suicide because of the condition.
Meltzer says his saving grace has been his relationship with his wife. “We’re very lucky to have found each other,” says Meltzer. “We never raise our voices to each other,” adds Cohen.
Copyright 2014 ABC News Radio