The mystifying world of misophonia

One day back in the winter of 2009 I received a frantic email from a friend saying “I cannot stand the sound my boyfriend makes when he eats! I must be mad! Can you help me?” I began to search for an explanation for what was happening to her, and thus I discovered “misophonia” and its devastating effects on both children and adults across Europe and America.

As I investigated, I read story after story on forums, meet-up groups and listservs about children who could not attend school or social functions, men and women who had to give up their office jobs, relationships and even marriages, families who were ready to kill each other. Many suffers felt alienated, angry, and regretful of their lost lives; even children spoke of suicidal thoughts. Everywhere there was a deep expression of emotional distress, pain, and hopelessness.

The term misophonia was coined in the early 1990s by Pavel and Margaret Jastreboff and has also been referred to by Marsha Johnson in the USA as Selective (Soft) Sound Sensitivity Syndrome (or “4S”). The Jastreboffs were actually investigating and studying tinnitus, and while doing so discovered that many tinnitus sufferers presented with an intense hatred of particular sounds. In the meantime, Dr Johnson, an audiologist, recognised that many of her patients who had an unusual sensitivity to certain sounds did not have concurrent tinnitus. The conditions were separate, different, and affected a broad spectrum of the population.

Although often unrecognised, misunderstood, and misdiagnosed, misophonia is a debilitating medical condition in which a sufferer develops an extreme sensitivity to everyday noises, most commonly other people’s eating and breathing (“mouth”) sounds.

Generally speaking, misophonia is initially triggered in childhood, especially around the onset of puberty, but can affect children as young as four years old. Typically it begins with sudden onset after what may feel like an emotionally significant incident (an example of this is a family meal, with the father telling the child not to eat with his/her mouth open). The “trigger” is often a family member, especially one they are closest to, and the afflicted suddenly becomes obsessed by/hypersensitive to a certain sound that family member makes or even simply draws attention to. Their reaction can range from irritation and intolerance to anger, rage and even violence.

There is no increase in any auditory activity, but rather an enhanced limbic (emotional) and autonomic nervous system (ANS arousal) response which produces an immediate overwhelming discomfort and a resultant “fight or flight” reaction.

The most common coping mechanism is simply leaving the premises where the offending sound is occurring; but then, how can one eat a meal with their spouse or family, continue at their job in an office where the sound of tapping keys is a trigger, or attend school where the squeak of a chair, desk or pencil makes a child cry or feel violently ill? How can someone who has flown miles from home to live elsewhere connect with their mother by telephone if it is the simple soft sound of s, p or b, or even the sound of a breath that sends her into a rage?

The “fight” response, when there is no escape, is just as offensive… a terrible emotional explosion or a noisy, violent physical attack, usually on an object (door, car, piece of furniture etc.). The primitive part of the brain overtakes the cognitive; conscious control and the ability to discriminate between genuine threats and harmless ones disappears. There is no gap between a stimulus and the response and it can all be terrifying to anyone experiencing or witnessing this amount of unleashed anger.

Why do some people perceive and respond to seemingly innocent sounds or motions in such emotive ways? All of us are annoyed to a degree by something, and this is due to our personal sensitivities, upbringing, experiences, points of view, values, mood, and the context in which memories are stored. To evaluate a sound it is necessary to compare it with other patterns in the auditory memory and then process and categorise it as important, unimportant, soothing, dangerous, or requiring some/no action.

Neuronal networks between the ear and the brain detect unpleasant or threatening sounds first to avoid them and immediately activate a reflex response to prepare for danger. But why would the brain process as innocent a sound as a sigh, a sniffle, a cough, a breath as danger? Are there defective neurons in the limbic areas of the brain which extend into auditory pathways? Is there a compromised sensory “filter” which permits ALL noises through with resultant overload? Is there a traumatic event from childhood that gets stuck in memory patterns and causes upheaval?

Sufferers of misophonia do not just hear the sound, but feel it, emotionally and physically. That painful, physical sensation leads to a cortical and adrenaline rush and its resultant overpowering emotion.

Just as we are all different, the variety and intensity of triggering is vast. Some sufferers feel that the perpetrator of their trigger sound is doing it intentionally, and especially rudely. Often they find that if a triggering sound is of mechanical or natural origin (or even an animal) they can forgive and forget it. Others are affected strongly by air conditioners, refrigerators, computer humming, and others by tapping, whistling, humming, the way someone moves their body, touches something or even wiggles their toes.

The list of reported triggers is enormous and often grows and expands with individuals so that more and more noises and movements are interpreted as dangerous and more people and circumstances are felt as threats. Even the anticipation that a trigger could present itself is enough to send a person through the roof (rage) or out the door (flight). There are many theories, but no clear-cut answers.

The neurophysical model

This model considers the interaction between the limbic, ANS and auditory systems. The limbic system is a group of brain structures (in particular the amygdala, hippocampus, and fornicate gyrus) situated at or near the edge (limbus) of the medial wall of the cerebral hemisphere. It controls our emotions, both positive and negative, and is strongly connected with all our five sensory systems.

The ANS is responsible for regulating all the functions in the brain and body over which we have no direct control (heart rate, breathing etc.). When there is real or imagined need for action the “sympathetic” component of the ANS takes over. In misophonia, connections between the auditory, limbic and ANS are enhanced, the amygdala “hijacked” and high levels of activation ensue. Once established, reactions to specific sounds are governed by the principles of conditioned reflexes.

As a stimulus is repeated, its effect is reinforced (the most simplistic example being that of family meals reinforcing a more general aversion to eating or “mouth” sounds). Once a sound suggests danger/invasion or even invalidation, it forces our brain to monitor its status at both a conscious and unconscious level. The sufferer is always on alert and in the “emergency room” of the sympathetic system of the ANS.

Ruminating and anticipatory anxiety replays over and over - a state not only unpleasant to experience constantly but also one which clouds judgement, distracts from tasks and goals, affects relationships and wears out both body and spirit.

The biochemical model

This model questions whether misophonia could be an inherited neurological disorder, perhaps from a damaged gene or an overactive nervous system (misophonia does appear within families, but also individually).

Is there a link with Sensory Processing Disorder in which various sensory information (not only sound) is often registered, interpreted and processed “differently” in the brain? Could there be an imbalance of neurotransmitters (serotonin, dopamine, glutamate) which results in a symphony in the brain that is out of tune? What role does the ear and its ability to “listen” rather than passively “hear” play? What about glands (thyroid, adrenals)? Is there a link with classic migraines and having a higher percentage of soma sensory cortex? Where does nutrition and diet fit in, or physiological intolerances (lactose, for example) or immune system abnormalities and complex viral disorders fit it?

Psychological models

These look at the connections with compulsive disorders like OCD, or the learned emotional response of a phobia. It has been questioned on an American discussion forum whether an annoyance with sounds or motions of certain people might be a way of trying to establish a degree of space or even serve as a psychological reaction to feeling dependent on a particular person.

Unfortunately the belief that misophonia is “in the head” has been the greatest deterrent to scientific investigation and acceptance of this condition and acceptance of this condition as real and needs further research. Sufferers have been ignored and dismissed by doctors, audiologists and consultants, and this continues today.

Without understanding of the mechanisms of misophonia, without authentic research and documented it cannot be managed or treated effectively. To date, various medications and supplements have been prescribed (among them mood stabilisers, beta-blockers, ADHD and Bipolar Disorder drugs, fish oils, vitamins, mineral supplements) and many therapies suggested (hypnosis, cognitive behavioural therapy, craniosacral therapy, sound therapy using wearable sound generators, neurofeedback, chiropractic adjustment, reconditioning, desensitisation, habituation etc.).

Results have been sparsely reported and anecdotal. In the United States, audiologist Marsha Johnson has developed a Misophonia Management Protocol which combines the use of sound-generating equipment with CBT. She has also set up an online misophonia group and a non-profit organisation (www.misophonia-association.org) which organises an annual convention for those who have the condition and provides information to assist in finding professional help, encourage research and advocate for the patient population.

Also in the USA Dozier has developed two apps aimed at rewiring the brain to reduce/eliminate reactions to specific triggers, and Scott Sessions has developed a Psychosomatic Remediation Technique (PRT) to "restore homeostasis to proper physiological functioning and internal stability".

Newer potential treatments may also appear, and although very few published results or statistics are available as yet with any of these approaches, the good news is that brain plasticity (its reprogramming capabilities) makes relief possible and life for these sufferers possible. If there is no cure as yet, healing is possible. And the more people become aware of this mystifying condition, the more it will be studied, researched and ultimately controlled.