Most people have cherished memories of their grandparents reading to them as children.
Ekaterina Pesheva's memories are quite different.
"I remember distinctly being very irritated and very angry listening to my grandmother reading children's books to me, like fairy tales," said Pesheva, 48, who lives in Boston. "I would become aware of her mouth getting dry, and that, for whatever reason, just irritated me unbelievably."
Pesheva has misophonia, a disorder in which certain sounds cause extreme feelings of anger and disgust.
Up to now, it's been thought that misophonia is triggered mainly by sounds related to the mouth and nose -- chewing, sniffling, lip-smacking, even breathing.
For example, the smacking lips and pasty tongue caused by her grandmother's dry mouth triggered Pesheva's misophonia.
"It was all that I could hear. I was not able to hear the actual content of the story. I was all of a sudden just engulfed into listening to the sound," Pesheva said. "I would plead, Grandma, please have some water! I would be just very angry at her. Of course, now I feel terrible about it, but it was a very visceral, very reflexive reaction."
But new research now shows that other common sounds and noises might trigger misophonia: finger tapping, mouse clicking, the clack of high-heeled shoes, the whir of an electric fan.
"Typically, you can ignore the sound of a clock's ticking, but this is something that is impaired in misophonia," said lead researcher Heather Hansen, a doctoral student in psychology at Ohio State University.
"You have this increased emotional reaction of disgust or anger, and it's something that tends to depend on context," Hansen said. "Maybe your mom chewing would make you feel rage, but a stranger chewing would not."
As many as 1 in 5 people are affected by misophonia, according to background notes from the research.
The effects of misophonia can go far beyond the mere irritation that an average person might feel when nerves are on edge and someone starts repetitively clicking their ballpoint pen, Hansen said.
Misophonia can cause such a visceral reaction that it prompts a primal fight-or-flight response in those affected, she said.
"Misophonia can have a real impact on your life," Hansen said. "Individuals with misophonia report that they have cut off social relationships. They maybe don't leave their house anymore. It changes the way they take job opportunities or pursue relationships and dating. Some attempt suicide."
Pesheva, who is director of media relations for Harvard Medical School, describes misophonia as "this eruption of irritation and disgust and anger that you feel in the pit of your stomach. It just rises up like it's volcanic in nature."
Little is known about the disorder, despite the powerful effect it can have on some.
Misophonia is not yet acknowledged as a diagnosable mental condition in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM), said Dean McKay, a professor of psychology at Fordham University in New York City.
The term was first coined two decades ago, and proposed diagnostic criteria for misophonia have been floating around for about 10 years now, said McKay, who wrote a chapter about misophonia for a book on obsessive-compulsive disorders.
"What I like to remind people is that all of us have an element of this," he said. "Imagine the sound of a pet that decides to begin cleaning itself in the middle of the night while everything else is completely quiet, and the irritation that may arouse."
"That's an example of how most people experience some form of sound intolerance, but it's more pervasive for people who struggle with misophonia," McKay continued. "It may include everyday kind of activities that most people don't think twice about, and it may also include specific individuals as opposed to others."
Previous studies have suggested that misophonia is caused by overly sensitive connections between the brain center that processes sound and the motor control areas of the mouth and face, Hansen said. That's why the classic triggers of misophonia involve chewing or breathing.
But Hansen's new study, published recently in the journal Frontiers in Neuroscience, shows that even though sounds trigger misophonia, the brain's auditory center might have nothing at all to do with it.
Misophonia instead appears to be linked to the insula, a part of the brain associated with strong emotions that include disgust, according to the findings.
In the study, 19 adults underwent MRI brain scans as they performed various tasks -- saying certain nonsense syllables like "ba ga ra da" out loud, or tapping their fingers on their leg.
People more powerfully beset by symptoms of misophonia had stronger connections between the insula and brain regions associated with motor movements, the study showed. This was true of moving the mouth and also tapping fingers on a leg.
At the same time, researchers found no connection at all to the brain's auditory center, Hansen said.
"The important connection was with the insula," she said. "It's important to note we didn't actually play any sounds for them at all. We were only looking at body movements and the brain. And we found that the part of the brain that is active when individuals move their finger connects differently in individuals with misophonia compared to individuals without misophonia."
In a way, it makes sense that misophonia might not be directly tied to sounds, even though it is triggered by them.
People with the condition also sometimes respond to visual triggers that remind them of the sound that bothers them, McKay said. For example, a person with misophonia might become angry or anxious watching someone prepare a meal or serve dinner.
"The visualization of it may lead to some anticipation that it's going to be emotionally intense," McKay said. "Some people will go as far as to avoid having meals with other people or avoid other settings where the noises might happen."
But McKay sounded a skeptical note about Hansen's study, arguing that the findings would have been more interesting if researchers had also included people "who find certain of those same noises to be appealing."
He points to the global phenomenon of ASMR (autonomous sensory meridian response), which is the polar opposite of misophonia.
People indulging in ASMR listen to gentle sounds that produce a feeling of well-being so strong that it is sometimes accompanied by a tingling sensation. These folks "find chewing and gustatory noises and other things like that to be very pleasing, very relaxing and soothing," McKay said.
If the same brain centers light up for ASMR as they do for misophonia, "it may mean that those areas are active for certain sounds and it has little to do with the aversive response," McKay said. "I didn't see anything in the study that could shed light on why this in particular would be unpleasant. It only showed that those areas are activated, so it seems like that's a really important missing ingredient here."
Given that misophonia has been researched little, there aren't many options today for treating or dealing with the condition, experts said.
Pesheva said her misophonia has persisted over the decades, and even might have gotten a little worse. She often finds herself begging her husband to blow his nose or have a drink of water to stop the noises that are driving her to distraction.
"Even though I fully realize rationally why this is happening, it does not necessarily make it better," Pesheva said. "My way of dealing with it is avoidance. When possible, I walk away. It's not always possible, but I've learned if I cannot remove myself from the sound, I just either bite my tongue and try not to listen or put my hands to my ears."
Stress management and coping strategies might help some deal with their misophonia, McKay said.
"We don't have a lot of good information on what the best approach might be for how to address this," he said. "To my knowledge, there really aren't any established or systematically studied approaches for treatment."
Cognitive behavioral therapy might be another option, said Dr. Shae Datta, director of cognitive neurology at NYU Langone Hospital-Long Island in Mineola, N.Y.
"They'll expose you to certain sounds and try to make you less sensitized to it over time," Datta said. "There are also adjustments like wearing earphones or letting people know your triggers. That is the way people manage it currently."
The Misophonia Institute has more about misophonia.
SOURCES: Ekaterina Pesheva, Boston; Heather Hansen, MA, doctoral student, psychology, Ohio State University, Columbus; Dean McKay, PhD, professor, psychology, Fordham University, New York City; Shae Datta, MD, director, cognitive neurology, NYU Langone Hospital-Long Island, Mineola, N.Y.; Frontiers in Neuroscience, Aug. 17, 2022