‘It feels like a knife is being stabbed into my ears’ says sufferer of rare hearing disorder
Hyperacusis and misophonia are some of the uncommon hearing issues with few treatments that profoundly affect sufferers
Move somewhere quiet and become a monk: This is the kind of advice that straight-faced doctors have offered Dave Vance since he developed something akin to high-definition hearing.
After chemotherapy treatment for non-Hodgkin’s lymphoma two years ago, the 36-year-old began hearing “amplified” sounds. Soon, the former rap artist could no longer tolerate the din of television in the next room. Sounds of babies crying, construction racket, even people chatting on the bus became unbearable.
For Vance, normal-volume noise “sounds like 10 pairs of nails scratching the chalkboard … and feels like a knife is being stabbed into my ears.” He says it’s “the worst feeling … and wild how little anybody knows about [the condition].”
Hyperacusis is the medical term for Vance’s relatively rare disorder, which affects approximately one in 50,000 people, often because of repetitive exposure to loud sounds, head injuries or adverse reactions to medications.
It’s one of several uncommon hearing conditions that profoundly affect isolated sufferers but for which there are few treatments, which explains why medical practitioners have recommended he seek a monastic living.
“I am honestly considering it,” Vance says in an interview conducted via e-mail because speaking on the telephone is too difficult for him. “I’m locked up in my house 90 per cent of the time because the outside world is too much for my ears to handle.”
When he does leave the house, he wears earplugs to block out noise. He avoids restaurants, social functions and, with little hope for treatment, has developed depression and anxiety.
B“This is a disease of loneliness,” he says. “When I think of maybe not being able to do all the things I used to — or things potentially getting worse — it takes quite a toll mentally, spiritually, emotionally.”
Vance also suffers from tinnitus, which is the perception of an internal ringing, buzzing, hissing or whooshing sound heard even though nothing external generates a noise to trigger it.
“It doesn’t kill you, but it causes a whole lot of psychological harm and a lot of work hours lost,” Phillip Gander, an auditory neurologist with the University of Iowa, says of tinnitus.
Gander notes that, despite affecting nearly 20 per cent of the population, tinnitus was just this year added to the International Classification of Diseases (ICD), a global diagnostic catalogue of health problems.
“It wasn’t even considered to be a problem until extremely recently,” he says. “Why is that?”
Gander believes there’s so much about how the brain processes music and language that’s not yet understood, even by those who spend their lives studying it.
There’s a very specific set of sounds, all repetitious, that the brain misinterprets as something toxic and sends the nervous system into fight or flight mode
— Jennifer Brout, psychologist
“Something as fundamental to our hearing as pitch … we still don’t really understand how [perception of it] happens,” he says.
Research on hearing is primarily concentrated on what Gander calls the “ascending auditory pathway,” or how sound travels its complex path from the outer ear into the cortex.
“A dirty secret of auditory neuroscientists is that we study that pathway almost exclusively in one direction,” Gander says. “We study the information going up to the brain but not the information coming down from it.”
That latter, lesser-known pathway down may hold keys to explaining misophonia, a condition in which certain repetitive sounds — both loud and almost inaudibly soft — trigger negative responses that range from increased heart rate and anxiety to intolerance, frustration and even aggression.
Misophonia isn’t recognized as a disorder in either the ICD or the Diagnostic and Statistical Manual of Mental Disorders (DSM), but it is very real for those who suffer from it.
“There’s a very specific set of sounds, all repetitious, that the brain misinterprets as something toxic and sends the nervous system into fight or flight mode,” says Jennifer Brout, a psychologist who treats children and adults with sensory-processing disorders. Brout also co-founded the Misophonia and Emotion Regulation Program at Duke University, a multidisciplinary research and treatment program, after learning both she and her daughter have misophonia.
Common trigger sounds are often those made by other people including sniffling, chewing, crunching or other mouth sounds such as snoring or breathing, she says. The sound of windshield wipers, car blinkers, keyboard tapping and clocks ticking can also trigger the fight-or-flight system such as sweating, elevated heart rate, panic and aggression.
“The response happens instantaneously,” she says. “For people who have this, their nervous system is always on alert and over-aroused. There is no off switch unless you get away from the sound. So it becomes like a stress disorder.”
Researchers have yet to pinpoint what causes misophonia and, as a result, struggle to treat it.
As scientists uncover the connections between the auditory system and the part of the brain that regulates emotion, there may be more help for misophonia sufferers, says Gander, the auditory neurologist from Iowa.
For now, most sufferers are told that they will simply have to learn strategies to cope.
“They’re having an overly strong response to what should be an innocuous stimulus,” Gander says. “Sound is just pressure waves. But it has so much more meaning. It can drive you to have extreme behaviour.”
Transformed from a stage-crashing extrovert into an anxious shut-in who is not able to work, Vance hopes that as the science of sound progresses, so will treatment options for fringe hearing disorders.
“I wouldn’t wish hyperacusis on my worst enemy,” he says. “It has changed my whole life.”
CREDITS: Writing by JESSICA LEEDER; Video by SEAN LILIANI; Creative direction by MONICA BIALOBRZESKI; Design and development by JEANINE BRITO