Scientists Scramble To Discover More About A Disorder That's Haunted People For Generations

Scientists all over the world are scrambling to find out what causes it, how to treat it and really just to identify it. But that doesn’t mean it’s something new. Many seniors have suffered in silence for decades.

Ask Michael Lawrence, 65, who has suffered from a sensitivity to certain sounds since he was six. Or better yet, ask him about his mother who died at the age of 93, after having drunk much of her life away to escape the sounds that haunted her.

Scientists have dubbed it misophonia. Literally meaning “hatred of sound,” the word is derived from the Greek words miso, “hate,” and phon, “sound.” It is also known as Selective Sound Sensitivity.

Simply put, misophonia may be the most common disorder you've never heard of. Filmmaker Jeffrey Scott Gould even released a documentary just last year called “Quiet Please…” after raising funding capital of $57,594 from people all over the world through Indiegogo. Gould has suffered for 50 years with misophonia. In the film, he explores not only the emotional and psychological impact that misophonia has on a person but also on their relationships, family dynamic, careers and basically every aspect of their lives.

Sufferers of misophonia have an adverse reaction to certain common noises or sounds such as chewing, breathing and throat clearing as well as certain pronunciations of particular sounds like p, k or s. And the sounds do not just bother sufferers. People who have misophonia experience feelings of intense anger, aggression and disgust when subjected to these sounds which they refer to as “triggers.”

One of the best ways to describe misophonia to those who have never heard of it is to compare it to fingernails on a chalkboard. But it’s still not a perfect comparison. Those types of cringe-worthy sounds can, for the most part, be avoided.

Lawrence should know. He has been avoiding sounds for almost sixty years. Unlike the majority of misophonia sufferers who report onset of the disorder at around 12, Lawrence said he was stricken at six years old, and he said it has only gotten worse. Though it has only recently come into the spotlight because of media attention, Lawrence said he doesn’t remember life without it, nor does his 39-year-old daughter and neither did his mother. “A lot of people had it and didn’t know what it was or what to do about it,” he said. “Everyone just thought that they were weird or irritable, cranky people. At least now we can talk about it. You don’t feel so alone.”

Lawrence said he knows now that misophonia ruined his mother’s life. “She dealt with it by drinking. She was always making comments about people eating loudly or slurping coffee.”

Lawrence said, after spending years of trying everything from varying diet and lifestyle changes that supposedly influence the brain and gut to neurofeedback and upwards of $30, 000 on various therapies, he believes it’s a neurological problem. “I believe it’s a sensory processing disorder where the brain and neurological system cannot process sensory input and it goes into a fight or flight response because it doesn’t know how to deal with it.”

The only coping mechanism that really works, he said, is avoidance. “Exposure therapy doesn’t work. The more exposure you have, the worse the trigger can get,” he said. “I don’t want to completely isolate myself, but I have to find a way to make it tolerable. Being away by myself can be recuperative. We need downtime so that we don’t get overwhelmed.”

For Lawrence, chewing graduated to snorting or “mucousy” sounds, clearing throats, repetitive sounds, clocks ticking, loud noises, tapping and nose blowing. Some visual triggers also bother him now like his wife talking with her hands as well as too much touching, poking or jabbing and certain materials. His wife triggers him the most, as is common with misophonia sufferers. Often the ones they love and live with are the worst triggers for them. And no one knows why.

“Doctors don’t even know what to do with it,” Lawrence said.

But they are trying.

Scientists are more than ever leaning toward the conclusion that misophonia is a psychiatric disorder rooted in neurology rather than audiology.  Still, very little research has been done into misophonia worldwide, though that is changing, and according to allergictosound.com, to date, less than 200,000 ‘known cases’ have come forward for diagnosis. That’s mainly because there is minimal diagnostic criteria and no insurance coverage for the disorder.

Allergictosound.com is a free website for misophonia sufferers, created by an Englishman who suffers from the disorder and wanted to fashion a free, shared resource where sufferers can learn more about misophonia, help each other and educate the general public.

He’s not the only one. Misophonia support and information groups are popping up all over social media sites such as Twitter, Facebook and Reddit as well as on Internet health forums.

While misophonia is starting to become recognized as a genuine neurological disorder, health professionals are largely in the dark about the condition (very few have even heard of it). In an attempt to do something, anything for sufferers, doctors will often prescribe treatment or medication for anxiety, depression or Obsessive Compulsive Disorder (OCD).

Misophonia doesn’t seem to have much to do with hearing, aside from it being the sense that sparks the brain to remind the sufferer to be miserable. Often people with misophonia have perfect or even slightly better than normal hearing. There also appears to be a genetic component to the disorder as family members often share these issues. Lawrence and his family certainly have.

Whatever scientists decide, there is little doubt that the approach to misophonia treatment will be multi-faceted. Audiologists will be needed to rule out hearing problems. Neurologists to study the brain. Psychologists to counsel sufferers and psychiatrists to work with medications if needed.

Possibly the biggest step forward to date in misophonia research came in February from a study led by Dr. Sukhbinder Kumar from the Institute of Neuroscience at Newcastle University in the United Kingdom and the Wellcome Centre for NeuroImaging at University College London (UCL). Kumar’s researchers discovered that the brains of misophonia sufferers are in fact going into overdrive when they are exposed to trigger sounds.

In his article published in Current Biology, Kumar reported that researchers at Newcastle found the “first evidence of clear changes in the structure of the brain’s frontal lobe in sufferers of misophonia and also report changes in the brain activity.”

“Brain imaging revealed that people with the condition have an abnormality in the emotional control mechanism which causes their brains to go into overdrive on hearing trigger sounds,” A Newcastle University press release reported in February. “Researchers also found brain activity originated from a different connectivity pattern to the frontal lobe. This is normally responsible for suppressing the abnormal reaction to sounds. The researchers also found that trigger sounds evoked a heightened physiological response with increased heart rate and sweating in people with misophonia.”

The researchers summarized that misophonia is an affective sound-processing disorder characterized by the experience of strong negative emotions (anger and anxiety) in response to everyday sounds. “The commonplace nature of these sounds makes misophonia a devastating disorder for sufferers and their families, and yet nothing is known about the underlying mechanism,” the article in Current Biology states. “Using functional and structural MRI coupled with physiological measurements, we demonstrate that misophonic subjects show specific trigger-sound-related responses in brain and body.”

“For many people with misophonia, this will come as welcome news as for the first time we have demonstrated a difference in brain structure and function in sufferers,” Kumar said. “Patients with misophonia had strikingly similar clinical features and yet the syndrome is not recognized in any of the current clinical diagnostic schemes. This study demonstrates the critical brain changes as further evidence to convince a skeptical medical community that this is a genuine disorder.”

In his March 16, 2017 article for Neurology Today, “Abnormal Brain Networks Underlie Misophonia,” Richard Robinson outlines the Newcastle study further.

Dr. Timothy Griffiths, Wellcome senior clinical fellow and professor of cognitive neurology at Newcastle University and his colleagues “have elucidated the functional and structural differences in the brain that underlie misophonia,” he writes. “They have shown that misophonic reactions are accompanied by highly exaggerated responses in the anterior insula cortex (AIC), a region of the brain critical for emotional processing, and in other regions associated with regulating emotional responses.”

“Misophonia is very different from mild irritation,” Griffiths said in the article, “and also different from the reaction most people have to hearing nails scraped on a chalkboard; misophonic triggers are noises most people are easily able to ignore. I was very skeptical about this as a neurological condition before I talked with people who had it. But now, it is clear this is a distinct syndrome,” and one that doesn't overlap with any other diagnoses, such as obsessive compulsive disorder.

Functional and structural brain imaging illustrate the neurologic basis for misophonia, a little-known condition which is often mistakenly diagnosed as tinnitus. “These individuals are normal in every other respect,” according to Griffiths, “except that they can't sit down to eat with their family,” or work in the same room as someone else.

Currently, there are no standardized measurements or treatments for misophonia, though some doctors recommend white noise sound generators to decrease the sufferer’s awareness of bothersome sounds. Others refer patients to therapists for cognitive behavior therapy, though many sufferers say it does no good.

Diane Duddy, AuD, a clinical audiologist at Washington University in St. Louis, who treats tinnitus and hyperacusis is one of only two physicians in the St. Louis Metropolitan Area who specializes in misophonia. And for now, specialize only means she rules out anything else that is hearing-related. She admits she can do little to actually improve the quality of life for sufferers beyond offering them white and pink noise generators.

But she too is trying. Seven years ago Duddy joined an audiologist in Oregon in attempting to identify the disorder. Her colleague said she had tinnitus patients who were complaining of suffering from Misophonia trigger sounds. “She didn’t know what to do with these people,” Duddy said. “So she reached out to tinnitus doctors at the audiology convention that year. She thought maybe we could use some of the same management strategies that we use for tinnitus.” According to the American Tinnitus Association (ATA) tinnitus is the perception of sound when no actual external noise is present. Commonly referred to as “ringing in the ears,” tinnitus can manifest many different perceptions of sound, including buzzing, hissing, whistling, swooshing and clicking. In some rare cases, tinnitus patients report hearing music.

A lot has happened since Duddy began offering to test for misophonia. In less than a decade, the disorder has been recognized and reported on in the Wall Street Journal, Reader’s Digest and the New York Times as well as on 60 Minutes, ABC News and many other news sources and websites.

Duddy and others use a questionnaire called the Amsterdam Misophonia Scale (A-MISO-S) developed by Psychiatrists Arjan Schröder, Nienke Vulink and professor of psychiatry, Damiaan Denys.

A Dutch psychiatrist, Schröder started his Ph. D. research project on misophonia in 2011 at the department of psychiatry of the Academic Medical Center (AMC) in Amsterdam, The Netherlands. This misophonia project was created at the AMC and includes studies on neuroimaging, EEG, genetics and the development of effective treatment. Schröder also works as a psychiatrist at GGZ inGeest, a mental health institute in Amsterdam. Nienke Vulink is a psychiatrist at the AMC. Denys is a professor of psychiatry at the University of Amsterdam and department head of psychiatry at the AMC. Denys focuses on anxiety and compulsive disorders. A philosopher, Denys has created a performance called Wat is Angst (What is Angst?), examining how anxiety and angst affects both individuals and societies.

The three developed an adapted version the Yale-Brown Obsessive-Compulsive Scale to measure the severity of the misophonia symptoms, which they named the Amsterdam Misophonia Scale (A-MISO-S).

They also authored a paper on their study of misophonia patients in 2013 suggesting that misophonia should be classified as a discrete psychiatric disorder. “Diagnostic criteria could help to officially recognize the patients and the disorder, improve its identification by professional health carers, and encourage scientific research,” the paper states.

Stating that misophonia could not be classified under current disorders, the three concluded: “In the present study we investigated 42 patients with misophonia. A specific acoustic cue, produced by a human being, provoked an impulsive aversive physical reaction with irritability, disgust and anger. The intensity of these emotions provoked a fear of uncontrollability with subsequent avoidance which was evaluated with the concept A-MISO-S. Patients showed aspects of [Obsessive-Compulsive Personality Disorder] OCPD. Hearing tests did not reveal any underlying deficits. Misophonia cannot be classified under current disorders…and should be delineated as a separate psychiatric disorder. We propose diagnostic criteria which could improve recognition by health carers and encourage scientific research.”

“What needs to happen is more research needs to be done so we can be more definitive of what right now is just everyone’s guess,” Duddy said. “We need audiology and psychiatry graduate students to do research projects on it. We haven’t even reached a point where we know who should be seeing these people. Is it [Obsessive Compulsive Disorder] OCD? Is there pure misophonia, or is it related to other things. It’s a team effort.”

For now, insurance companies do not recognize misophonia as a separate disorder, so Duddy is not optimistic. But she said she will go on trying to do what she can to raise awareness and at least let sufferers know what they’re experiencing is real. “Medicare doesn’t even cover hearing aids,” Duddy said. “How do we expect insurance companies to cover misophonia? There is not even a diagnostic code for it. I’m helping recognize it at least. A lot of people come in here and say, ‘I finally have a name for it.’ I also recognize it with letters of accommodation [Duddy is able to provide letters to school administrators or bosses validating the individual has a disorder]. I’m saying it’s real and the criteria we have currently says you fall under it.”