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For Ellie Rapp, an 18-year-old high school student from Pittsburgh, the sound of her family chewing her dinner can be … unbearable.
"My heart begins to pound, I go in two ways, I start crying or I get very angry, it's really intense, I mean, it's like you're going to die. ", she says.
Rapp experiences this reaction to some noises since childhood. She remembers returning home from kindergarten when her mother turned on the radio and started singing, which prompted Rapp to scream and cry hysterically.
"It's my first memory," says Rapp.
Over the years, "everyone was confused, but inside, I felt like I was going crazy," she says.
It's only in the college that she found a name. Kathy Rapp, his mother, had been looking for help for years. She then found an article on the Web about a condition called misophonia.
"And I read it and said," That's what I have. It's that, "Ellie said. Rapp.
Misophony is characterized by intense emotions, such as rage or fear, in response to very specific sounds, especially ordinary sounds that other people produce. The cause is unknown.
For people who suffer, the sounds of the mouth are common triggers.
"Chewing is almost universal, chewing gum is almost universal, and they do not like the sound of scraping the throat – coughing, snorting, blowing their nose – many things," says Jaelline Jaffe, a psychotherapist at Los Angeles and specialist in misophonie and works with Rapp.
For some, the sight of someone chewing, a specific smell or even buzzing, tapping or clicking with a pen can trigger a negative reaction.
"It's as if the survival part of the brain thought it was under attack or in danger," says Jaffe.
Misophonia received his name just a few years ago and is not officially listed in the diagnostics list of any medical textbook. Many doctors have never heard of it and if patients mention their symptoms, they are sometimes referred or have a mood disorder.
Although many misophonie sufferers also suffer from anxiety or depression, they are not all. There are few studies on misophony and experts disagree whether it should be classified as its own disorder or as a subset of another.
Because it is so poorly understood, people around it have a hard time believing or understanding how painful their symptoms can be.
A small recent study offers new potential insights into the functioning of misophonie.
"We are rather convinced that we have found very good evidence to relate this disorder to particular brain patterns." says Phillip Gander, who is studying how the brain makes sense of sound at the University of Iowa. He was part of a team that published a study in Current biology in 2017, this suggests that the brain of people with misophonie reacts differently to certain sounds.
The team examined 20 adults with misophony and 22 without. Participants were asked to rate the unpleasantness of different sounds, including common trigger sounds such as eating and breathing, universally hated sounds like nails on a blackboard, and neutral sounds like footsteps or bird chirping. .
"What happened is that the response to neutral sounds and negative sounds was the same in both groups," he says.
But people with misophonia have found the sounds of eating and breathing very disturbing. Those unconditionally do not have it.
People with misophonia also had some of the classic signs of stress when they heard these triggering sounds: "Their heart rate has increased and the palms of their hands have sweated more," he says.
In addition, people with misophony appeared to have unusual brain activity when triggering sounds were emitted.
"In the misophonie group, the activity was much more important in some parts of their brain," says Gander – including parts of the brain that deal with emotions.
This is an interesting study, recognizes Steven Taylor, a professor in the Department of Psychiatry at the University of British Columbia, specializing in mood disorders. But this poses a number of important problems, he says. First, it was very small and the misophonie of the subjects was diagnosed only by a short questionnaire. "In studies of clinical conditions such as misophony, questionnaire diagnosis is generally inadequate, and a face-to-face interview with a qualified clinician (for example, a psychologist) is usually necessary," he explains.
In addition, the study does not show what causes misophony, but only that it is associated with certain areas of the brain and their connections, he adds.
Gander agrees that more work remains to be done. "It helps us identify some brain targets to look at," he says.
For the misophonie community, studying the brain has been a big problem.
Marsha Johnson is an audiologist in Portland, Oregon, specializing in misophonie. "It was phenomenal – it was the first research that showed our population that what they owned was real," she says.
Johnson is one of the first to identify misophonie. She began to recognize that a number of her young patients had symptoms that were difficult to explain, that it was about hearing disorders. or psychological problems.
"They were perfectly developing their normal children up to a certain period ranging from 7 or 8 years old to about 13 or 14 years old – and mostly girls," she says. In addition, their triggers were most likely to come from close family members.
In 1999, she dubbed it the syndrome of selective sensitivity to sound.
But a more melodic name – misophonie – would be of interest later after being named by scientists who wrote an article describing the symptoms of decreasing sound tolerance in 2001.
Misophonia means hatred of sound. Which, as Johnson points out, is not technically accurate.
"Most of these people do not hate sound, they only hate certain sounds," she says.
Johnson began speaking at conferences and conducting online group discussions to draw attention to misophonie. Thousands of people have come. She has developed a network of providers to work with patients with misophonia, including therapist Jaelline Jaffe.
But the community is still relatively small and the recognition of the condition is still not universal. On its rare diseases website, the National Institutes of Health rank Misophonia in the list of chronic diseases (although Jaffe and Johnson have said it is probably underdiagnosed and perhaps less rare).
In addition, it does not appear in the bible of mental disorders, the DSM-5, which prevents doctors from identifying it and it is rare for insurers to cover the treatments that are linked to it.
"The problem is that the whole domain is not defined yet," says Johnson.
And, there are no bulletproof treatments. But some strategies can help someone to get out of it. Flooding the ears with noise, using ear muffs, breathing consciously or simply getting up and walking quickly can redirect the patient's attention. Others have found antidepressants or helpful exercises.
For Ellie Rapp, a combination of noise canceling headphones and a slightly different life learning helped her excel at school and face the house.
"Misophonia … I would say it was customary to define who I am, but now I see it as another part of my life," she says.
She will be graduating from high school this spring and plans to study cognitive science at Case Western Reserve University in the fall.
"I basically want to be a Dr. Jaffe and get my SciD or PhD and finally solve the mystery and heal it," she says.
Ellie Rapp's mother, Kathy, points out that family support plays an important role in helping people with misophonia. At conferences and meetings, they met isolated and desperate adults because their families did not believe them.
"It sounds weird but it's very real and the help of a family is essential to help a person live a fuller life," she said.
April Fulton is a former editor-in-chief of the health and food sector of the NPR Science Office. Follow her on Twitter @fultonhere.
Jane Greenhalgh contributed to the writing of this story.