The following consists of four different hand-outs for health professionals–a traditional letter, a fact sheet, a copy of the recent NYTimes article, and the MAS. Misophonia sufferers are encouraged to use any of the following based upon their needs. The fact sheet was compiled with the thought that many doctors will not take the time to read a traditional letter.
This letter is an attempt to explain the medical condition termed “Misophonia” or “4S” for Selective Sound Sensitivity Syndrome. This problem is just beginning to be researched by the scientific community. A current hypothesis being explored is that Misophonia is a neurological disorder in which selective auditory signals trigger a fight-or-flight reflex.The average age of onset appears to be between 8 and 12 years old and the symptoms normally come on suddenly causing the patient and his/her family a great deal of anguish.
Someone who suffers from this condition typically has a strong negative emotional reaction to the repetition of a variety of sounds–frequently associated with mouth noises such as chewing or slurping or breathing. However, there are many different sounds, or triggers, that can cause a problem for someone with Misophonia such as sniffing, pens clicking, heel-tapping, typing, dogs barking, birds chirping, etc. Typically any sound that is repeated enough has the potential to become a trigger. Sometimes just the sight of one of these behaviors can trigger an intense reaction. Some Misophonia sufferers also have purely visual triggers like jiggling legs or other repetitive mannerisms. Each individual has different triggers and also has different emotional reactions, however, the vast majority have in common a feeling of some degree of anger at mouth sounds. While mild sufferers of Misophonia may feel tense or irritated by these sounds, more severe cases involve uncontrollable outbursts of panic, anger, and often the imaging of violent encounters.
It is very important to realize that the individual with Misophonia often has little or no control over their reactions. They realize that their sensitivities to these sounds are irrational, but their brains appear to get hijacked and their emotional centers activated, perhaps related to a brain error involving the normal “fight or flight” response that all humans experience in a threatening situation.
Many people with Misophonia suffer for years in silence, believing that they are the only person experiencing this reaction and that they must be “crazy.” They often try many different strategies to cope with or avoid their triggers including earplugs, eating in isolation, white noise generators, prescribed medications, drugs/alcohol/self-medication, hypnosis, CBT and other therapies, but nothing truly seems to provide significant relief. Misophonia sufferers feel misunderstood, isolated, and hopeless. In extreme cases, sufferers can become deeply depressed and even suicidal.
The growing strength of international online support communities suggests that Misophonia is a widespread problem. There are currently many thousands of registered users on the sites listed below, and posts often express frustration with health care providers who are ignorant of the existence of this condition and who underestimate the severity of its symptoms. It will be most helpful for medical professionals to become more aware of this syndrome and understand that their patients who have Misophonia are in desperate need of understanding and creative treatment.
Some informative websites about Misophonia are listed below:
MISOPHONIA INFORMATION SHEET
September 5, 2011 When a Chomp or a Slurp Is a Trigger for Outrage
For people with a condition that some scientists call misophonia, mealtime can be torture. The sounds of other people eating — chewing, chomping, slurping, gurgling — can send them into an instantaneous, blood-boiling rage.
Or as Adah Siganoff put it, “rage, panic, fear, terror and anger, all mixed together.”
“The reaction is irrational,” said Ms. Siganoff, 52, of Alpine, Calif. “It is typical fight or flight” — so pronounced that she no longer eats with her husband.
Many people can be driven to distraction by certain small sounds that do not seem to bother others — gum chewing, footsteps, humming. But sufferers of misophonia, a newly recognized condition that remains little studied and poorly understood, take the problem to a higher level.
They also follow a strikingly consistent pattern, experts say. The condition almost always begins in late childhood or early adolescence and worsens over time, often expanding to include more trigger sounds, usually those of eating and breathing.
“I don’t think 8- or 9-year-olds choose to wake up one morning and say, ‘Today my dad’s chewing is going to drive me insane,’ ” said Marsha Johnson, an audiologist in Portland, Ore., who runs an online forum for people with misophonia.
But that is what happens, she said, adding, “Soon the kid doesn’t want to come to the table or go to school.”
Aage R. Moller, a neuroscientist at the University of Texas at Dallas who specializes in the auditory nervous system, included misophonia in the “Textbook of Tinnitus,” a 2010 medical guide of which he was an editor.
He believes the condition is hard-wired, like right- or left-handedness, and is probably not an auditory disorder but a “physiological abnormality” that resides in brain structures activated by processed sound.
There is “no known effective treatment,” Dr. Moller said. Patients often go from doctor to doctor, searching in vain for help.
Dr. Johnson agreed. “These people have been diagnosed with a lot of different things: phobic disorders, obsessive-compulsive disorder, bipolar, manic, anxiety disorders,” she said.
Dr. Johnson’s interest was piqued when she saw her first case in 1997. “This is not voluntary,” she said. “Usually they cry a lot because they’ve been told they can control this if they want to. This is not their fault. They didn’t ask for it and they didn’t make it up.” And as adults, they “don’t outgrow it,” she said. “They structure their lives around it.”
Taylor Benson, a 19-year-old sophomore at Creighton University in Omaha, says many mouth noises, along with sniffling and gum chewing, make her chest tighten and her heart pound. She finds herself clenching her fists and glaring at the person making the sound.
“This condition has caused me to lose friends and has caused numerous fights,” she said.
Misophonia (“dislike of sound”) is sometimes confused with hyperacusis, in which sound is perceived as abnormally loud or physically painful. But Dr. Johnson says they are not the same. “These people like sound, the louder the better,” she said of misophonia patients. “The sounds they object to are soft, hardly audible sounds.” One patient is driven crazy by her beloved dog licking its paws. Another can’t bear the pop of the plosive “p” in ordinary conversation.
When people with the disorder can’t avoid the sounds, they sometimes try earplugs to block them, or white-noise devices to mask them.
Family links are common. Ms. Siganoff suspects her father had the condition, too. “He would buy us new shoes and complain we were walking too loud,” she said.
The prevalence is unknown. Dr. Johnson’s Yahoo group, soundsensitivity, has about 1,700 members worldwide. One member, a man from Canberra, Australia, runs soundsensitivity.info, an informational site for the general public.
Meanwhile, those with the condition cope as best they can. Ms. Siganoff says she remains enraged until she says something like “shut up” or “stop it.”
“If I don’t say anything, the rage builds,” she said. “That vocalization is enough to stop the reaction.” (Echolalia, or mimicking the offensive sound, is common, Dr. Johnson said.)
As a young adolescent at the dinner table, Heidi Salerno tried to discreetly plug her ears or chew in sync with others so her own chewing noises would drown theirs out.
Doctors told her she was too controlling, said Ms. Salerno, 44, a lawyer in San Diego. “But there are many things I am not in control of, and I don’t feel rage about it,” she said. “I was always brushed off.”
Ms. Salerno shuts her office door against bothersome sounds like pen clicking. She is a champion swing dancer, and when she teaches dance she prohibits gum chewing in class, telling her students, “If you are chewing gum, I will be distracted.”
Donna McDow, 57, a retired secretary who lives near Los Angeles, tries a different tack, telling people she has a bad headache. “Everybody understands a headache,” she said. “Nobody understands what we have.”
The Misophonia Activation Scale (MAS-1)
is intended to guide clinicians and patients in assessing the severity of a sufferer’s condition. It concentrates on physical and emotional reactions to a particular misophonic trigger. Someone with Misophonia may not necessarily exhibit all, or even many, of these behaviours. Also, some sufferers may experience symptoms in a different order, for instance, engaging in some “confrontational” coping behaviours before adopting more co-operative ones. This scale is being enclosed here in an attempt to facilitate dialogue between patients with Misophonia and their physicians.
Person with misophonia hears a known trigger sound but feels no discomfort.
Person with misophonia is aware of the presence of a known trigger person but feels no, or minimal, anticipatory anxiety.
Known trigger sound elicits minimal psychic discomfort, irritation or annoyance. No symptoms of panic or fight or flight response.
Person with misophonia feels increasing levels of psychic discomfort but does not engage in any physical response. Sufferer may be hyper-vigilant to audio-visual stimuli.
Person with misophonia engages in a minimal physical response – non-confrontational coping behaviours, such as asking the trigger person to stop making the noise, discreetly covering one ear, or by calmly moving away from the noise. No panic or flight or flight symptoms exhibited.
Person with misophonia adopts more confrontational coping mechanisms, such as overtly covering their ears, mimicking the trigger person, engaging in other echolalias, or displaying overt irritation.
Person with misophonia experiences substantial psychic discomfort. Symptoms of panic, and a fight or flight response, begin to engage.
Person with misophonia experiences substantial psychic discomfort. Increasing use (louder, more frequent) use of confrontational coping mechanisms. There may be unwanted sexual arousal. Sufferer may re-imagine the trigger sound and visual cues over and over again, sometimes for weeks, months or even years after the event.
Person with misophonia experiences substantial psychic discomfort. Some violence ideation.
Panic/rage reaction in full swing. Conscious decision not to use violence on trigger person. Actual flight from vicinity of noise and/or use of physical violence on an inanimate object. Panic, anger or severe irritation may be manifest in sufferer’s demeanour.
Actual use of physical violence on a person or animal (i.e., a household pet). Violence may be inflicted on self (self-harming).