Below is what I consider to be one of the most important medical articles that I have read in some time. It is not overly scientific in nature, observational case studies would be the best term I think. It is the subject matter that is important- the case histories of ordinary people dealing with symptoms that I and my CAPD find all too familiar. It usually takes a good long while for the physical pain to set in for me, its is like compound interest, one thing piles on-top of another and than another. Stress always aggravates it, along with diet, sleep, and a number of other factors. Misophonia though sounds like Hell on Earth if you ask me. So I remind myself yet again, “It can always get worse.” I will be watching now for developments around this conference and Misophonia in general.

And a special, most sincere thanks to Charles Bethea for this article. I can speak from frequent and deeply personal experience that people with auditory issues are often ignored, shunned, mocked, and marginalized in every part of our society. So on behalf of all of us, “Thank you for noticing, and thank you for your writing.”

Pax Tibi, James H. Peterson III

The Chewing Sound and the Fury

What if small, everyday noises ruined your life?

by Charles Bethea |
July 18, 2013

photo credit: Misha Gravenor

Lunch at the Marriott hotel in Mesa, Arizona, was southwestern style: a buffet tray of overcooked chicken breasts and soggy enchiladas. I had recently made the acquaintance of a friendly man in his late thirties with a shaved head and a pale oblong face named Paul Tabachneck, and we navigated the lines for food and utensils, then sat down at a lunch table together to eat our meal. Tabachneck, I noticed, ate carefully, eyes trained either on his own plate or a single spot on the beige walls. But his conversation was lively. He was telling me about busking as a guitarist in the New York subway while trying to achieve a lifelong dream of becoming a professional musician. And then, when we’d been talking for about ten minutes, I scraped my knife against the plate trying to cut the dry chicken. Tabachneck whipped his head around to look at me, his eyes suddenly cold.

“Did you have to do that?” he snapped. “And did you know that your jaw pops when you eat?”

We’re all annoyed by annoying sounds: fingernails on chalkboards, car alarms, Gilbert Gottfried’s screech. But some people are more than merely annoyed—certain sounds can send them into an agonized frenzy. There’s the journalist from Atlanta who wanted to reach across the dinner table to strangle his loudly chewing father; the computer scientist from Arizona who hated the sound of knives so much his girlfriend developed a phobia, too; the housewife from Oregon who moved her whole family out of her home so she wouldn’t have to listen to them. One teen couldn’t stand the sound of her mother sighing and, after going on anti-depressants, attempted suicide three times. Psychologists have begun to call them misophones—people with an acute reaction to specific, usually low-volume sounds. But because the condition is still poorly understood, sufferers struggle to convince their families, friends, and employers that their problem isn’t just a heightened form of neuroticism. In this hotel, however, where the first-ever scientific conference on misophonia was being held, tales of extreme aural agony were pouring forth, and sufferers who thought they were alone in their misery were finally meeting others of their kind. You just had to be very, very careful with your cutlery.

When Tabachneck was 14, he and his father were watching a movie together in their living room in Pittsburgh; Tabachneck’s dad started pushing all his ice-cream melt together into a puddle, repeatedly clinking his spoon against the bowl.

Up to that point in his life, Tabachneck’s relationship with sound had been normal. He loved music, enjoyed the sound of laughter. He found sirens and the trains that passed within earshot of his bedroom to be somewhat grating. But this clinking was something different—it provoked a combination of anxiety and nearly physical agitation that he couldn’t ignore. “Are you done with that yet?” he remembers shrieking at his father. It was the beginning of a lifetime of noise-related misery.

Tabachneck went to Carnegie Mellon to study computer science but dropped out because the clicking keys in the computer clusters made him so tense. He took a job in customer service for a cellular provider, where a co-worker had a habit of chewing ice. One day, unable to control himself, Tabachneck lunged at him. He actually enjoyed working at call centers and found he had a knack for calming people down over the phone. But interacting with certain colleagues face to face made him crazy: One spat chewing tobacco into a cup, another talked with his mouth full, and a third brought in an old Dell keyboard because he liked the sound of clicking keys.

After hearing problems had been ruled out—Tabachneck’s only obvious aberration was perfect pitch—his parents were convinced that his issues were psychological. Over the years, a rotating cast of mental health specialists offered a variety of diagnoses—attention-deficit disorder, obsessive-compulsive disorder, delusional personality disorder. One psychiatrist told Tabachneck that he was trying to exert a narcissistic level of control over noises, because he was disappointed with his struggling singing career. (Since 1995, when he put out his first tape, Tabachneck has released six full-length albums, mostly in the folk-pop category. He has opened shows for a young John Mayer and an old Ted Nugent, but he hasn’t been successful enough to quit his day jobs.) To remove the need for control, the psychiatrist prescribed anti-depressants and anti-psychotics.

The drugs didn’t help much with Tabachneck’s relationships. He loved one girlfriend enough to consider marrying her, but still had to eat in a separate room to avoid hearing her chew. A later romance ended because the woman smacked her gum. He’s now dating a social worker who occasionally cracks her joints. They argue about how he handles his problems, and she sometimes feels exhausted by them. “Most people can’t be in a relationship with a misophone,” he says, “because they don’t want to feel guilty for eating cereal in a porcelain bowl.”

Through all of this, Tabachneck continued to seek help—scouring the Internet for clues, querying various medical professionals. In recent decades, researchers have discovered a deeper relationship between sound and psychology—the mental effects of noise pollution, the ways in which certain kinds of sonic disturbances can hinder cognitive development. But the closest condition Tabachneck could find to his own was called hyperacusis—increased sensitivity to all sound. That still didn’t exactly fit his symptoms; many sounds didn’t bother him at all. Nothing made sense until the e-mail he received on April 13, 2010—he still remembers the date—from an audiologist he’d reached out to in New York. She told him he sounded like he had a textbook case of an emerging sound- sensitivity disorder called “misophonia.”

In 1997, in a far corner of the world of sound, Oregon audiologist Marsha Johnson came across a girl who couldn’t bear the noise her father made when he chewed his fingernails. Similar cases started trickling into her small clinic in Portland—people who, around puberty, had developed acute problems related to specific noises. She began to talk to fellow audiologists about it, including the eminent Professor Pawel Jastreboff of the Emory School of Medicine. Johnson initially named this condition “soft sound sensitivity,” because that’s exactly what it seemed to be: low-decibel sounds that were both common and unbearable. (She still thinks that’s a more precise term than misophonia, which means hatred of sound.) Having seen hundreds of misophones since then, Johnson has become a leading advocate for the disorder, creating an online forum for sufferers and helping to organize the Arizona conference.

Johnson and a half-dozen other experts in this country view misophonia as an “old brain” problem, likely located in the part of the cortex that processes emotion and that evolved long ago. “When people hear these sounds, they react with intense emotion,” she says. “It isn’t a higher cognitive function where you’re going, I don’t like white chocolate lattes. This is like a yellow jacket sting: You immediately slap, jump, run, and scream.”

In 2002, Jastreboff and his wife, Margaret, published a paper with the respected Australian and New Zealand Journal of Audiology that introduced the term “misophonia.” The condition still isn’t widely understood, and there are audiologists who prefer to lump it in with hyperacusis and other hearing disorders. Still, soft sound sensitivity is gradually getting wider recognition. In 2012, talk-show host Kelly Ripa came out on television as a sufferer. She told ABC News, “The sounds of swallowing and chewing make me insane.”

It’s impossible to know how many people suffer from misophonia, and Johnson guesses that many misophones have been given other, incorrect diagnoses. But of the 4,000 misophones who post on her Web forum, “Sound Sensitivity,” a half-dozen were at the Marriott Hotel this March, along with about 25 psychologists and audiologists. And among that group, Tabachneck—now a paunchy 38-year-old I.T. specialist—was a sort of star. His plaintive song “Misophone” (lyrics: “It wasn’t quirky / It wasn’t funny / It wasn’t something any drink could wash away”) had circulated online before the conference, and a few misophonic groupies had shown up. Scott, a fortysomething electrical engineer, approached Tabachneck during a break between talks. “It’s a work of art,” he said, about the song. Soon, they started talking sonic triggers. Scott had a problem with sniffling.

“Burping has always bothered me,” Tabachneck responded. “And my girlfriend does this thing where she cracks her neck …”

“Oh God, no …”

“Yeah, where you snap back like that.” He silently imitated the maneuver.

“There’s a woman here who does that,” said Scott. “There’s also where you hear something that sounds like somebody cracking knuckles and all of a sudden you’re hypervigilant.”

“You’re looking to find who cracked their knuckles,” said Tabachneck, nodding. “Always looking. It never ends.”

I heard more than a few conversations like this at the misophonia conference—Seinfeldian discussions of the most teeth- jarringly annoying noises in the world—between misophones speaking with the enthusiasm of people meeting a fellow traveler for the first time. (Seinfeldian, or perhaps Silvermanian: Based on some of the comedian’s public comments, Tabachneck believes that Sarah Silverman—who has tweeted, “I very much do not want to hear your skeleton breaking down food in your mouth please”—is a misophone, too.)

Misophonia isn’t included in the so-called bible of psychiatric diagnoses, which came out on May 18—it’s too recently observed, for one thing. But many of the new disorders in the DSM-V—including hoarding, skin-picking, and in a category for “further research,” Internet gaming disorder and caffeine use disorder—sound a little like misophonia: conditions you might have, or could imagine having, personal quirks viewed in an extreme light. Critics of the new DSM-V argue that everyday life is being pathologized: According to the National Institute of Mental Health, 25 percent of adults have a diagnosable mental disorder in any given year. “Trying to establish when something crosses the line from normality to illness is a total rat’s nest,” says Gary Greenberg, a psychotherapist, author of Book of Woe, and vocal critic of the new DSM-V. “People have been trying to figure out this distinction for centuries, and nobody has done it.”

In the post-Freudian era, psychiatry has essentially punted on the question, coming up with a definition that doesn’t really work: A mental disorder causes people distress or impairment. But sometimes people don’t know they’re impaired, like schizophrenics. Or—in the case of homosexuality, once considered a disorder—the distress is caused by prejudice. “So,” says Greenberg, “the attempt to define ‘mental disorder’ is as doomed as the attempt to define ‘disease.’ ” In reality, you start to identify a disorder both when there’s a demand for services, or a market, as is beginning to be the case with misophonia (which, Greenberg thinks, will probably wind up in the dsm someday because of the specificity of its symptoms).

Whether that makes it mental illness in some abstract sense or not doesn’t really matter for sufferers like Tabachneck, who experience life-altering discomfort on a daily basis. At the end of the conference, Tabachneck performed an acoustic version of “Misophone” for the group of audiologists and psychologists. They gathered around and asked what kind of guitar he uses and how he first realized music was a refuge from his condition. As I stood behind him, taking notes, I absentmindedly sucked on a peppermint, which clicked against my teeth once or twice, the sound barely registering above the level of the pleasant chitchat. Tabachneck wheeled around in the middle of a sentence, his face shifting from warmth to disgust: “What are you doing? Didn’t we talk about this?” he yelled.

Johnson says that misophones will try anything to relieve their pain: “You could say, ‘I’ll hit you on the head with a guitar and it will cure you,’ and you would have a hundred people lined up to pay you five thousand dollars to hit them on the head.” She’s testing a program that uses sound-generating equipment—creating various types of ambient and white noise—to help weaken the individual’s abnormal connection between certain sounds and the autonomous nervous system, paired with cognitive behavioral therapy. Other experimental approaches include neurological feedback, counseling, chiropractic work, acupuncture, dietary changes, and a new-agey serenity prayer. But, desperate for help, misophones often take more practical steps, drowning out the irritating soft sounds with an ocean of ambient noise. At the conference, Johnson mentioned some misophones who work as Zumba instructors or in bowling alleys; others use iPods, MP3 players, fans, water fountains, bubbling fish tanks, air filters, sound pillows, Pandora stations, YouTube channels, expensive hearing aids that block specific frequencies, and headsets that play white noise, lower-frequency “pink noise,” and the lowest-frequency “brown noise.”

In March, Tabachneck conducted his own, small-scale experiment: He went to see The Call at the Magic Johnson theater in Harlem. The Halle Berry thriller was so-so, but the experience was a personal breakthrough. Tabachneck remembers going to see The Artist with his girlfriend and having a terrible time. A couple sitting behind them were talking during the movie. After he scolded them, they started eating popcorn so loudly it seemed to him like a deliberate provocation: “animated smacking off the lips and loud attacks on the crunch.” This time, however, taking advice from one of his new misophonic buddies from the conference, Tabachneck was able to get a headset for the hearing-impaired and a seat toward the back of the theater. With the headset’s thick padding, the popcorn-chomping sounds were dampened, disappearing once the film filled his ears. He relaxed. “People eat popcorn until they get sick of it,” he told me later, “which is usually a half-hour in. So toward the end, I actually removed the headphones to hear the audience’s reaction to the last few scenes. And it was totally worth it.”

Charles Bethea is a journalist based in Atlanta. He has written for The New Yorker, The New York Yimes Magazine, and GQ, among others.

Source URL: http://www.newrepublic.com//article/113667/misophonia-treatment-what-if-chewing-sounds-ruined-your-life