What is Misophonia?
Misophonia (dislike of sound) has also been called Selective Sound Sensitivity Syndrome (4S) by Dr. Marsha Johnson, audiologist. It is an unusual condition that has onset in childhood, often between the ages of 8-12. The most common symptoms are strong reactions of softer or quieter sounds or noises, called triggers by Dr. Johnson in the late 1990s, and visually irritating stimuli like the sight of someone chewing gum. A few sufferers also have other sensory issues like odors, etc, but this is a very small percentage of people.
Misophonia is hard to explain with our current research knowledge base. The condition was really identified in 2011 when Joyce Cohen wrote an article in the NYT which included information about Dr. Johnson and her clinic in Oregon where she had been collecting these cases since 1997. By the end of 90s, she had gathered up 800 individuals suffering from this unusual condition.
Misophonia (mizo-phonia) has been defined as an abnormal response from the emotional (limbic) area of the brain. This was an early definition and did not account for the fact that visual triggers are common as well as what Dr. Johnson calls MEMORY Triggers, in which a person just thinks about a trigger, and experiences the response.
Dr. Johnson came up with the term 4S for the condition as well as the word trigger, and the term Anticipatory Phase as well, in which the person is aware that an event is approaching (like a meal time) and begins to experience many negative emotions and sensations prior to the actual event.
Various research projects around the world are pursuing a better understanding and definition of this mysterious and difficult condition. Teams of scientists in various fields such as Neurology, Behavior Science, Psychology, and Biochemical Science are eagerly studying these individuals for differences in brain function, personality, genetic links, and so much more.
What Help Do We Offer?
Our clinic provides diagnostic help for those who suffer from Misophonia. We test hearing, assess degree of impairment, review medical records for any causative factors, include family and significant others in counseling and conversation as well as planning for audiological help options. We coordinate with psychotherapists and psychologists in our clinic as well.
The most popular tool available from audiologists for Misophonia is educational counseling combined with auditory therapies. The most popular auditory therapy is the use of sound-generating devices, hearing aid sized units that produce a variety of noises and sounds to help mask out or block out intruding sounds.
The most popular units are the newer Bluetooth Streaming Audio devices, from Signia or Widex hearing aid companies. These units use a tiny interface device to connect directly to your smart phone to allow the wearer to stream in sound, music, noise, or anything they can find. Nearly invisible, and covered by hearing aid benefit plans, these units have proven to be a mighty helper in improving the lives of those with Misophonia.
What to Expect at an Appointment?
We set aside 90 minutes for an initial appointment. There is a packet of forms to complete prior to the clinic visit which include unique forms like the MAQ, rating forms for others to complete, and a history of the condition along with important medical information. During the visit, a hearing test will be be completed. Dr. Johnson will identify with the patient and family if present, the most difficult triggers, situations, and help structure coping strategies. The bilateral auditory units will be fit and tried in the office to determine applicability for assistive technology options. A plan for a school, college, or work can be created and sent via email as a draft to review and approve. To date, we have evaluated over 1000 patients with Misophonia in 20 years and our diagnostic letters have been used in school plans, college accommodation and on the job settings. Most of the visit can be covered by insurance and we do ask for a deposit for the visit when you call to make an appointment.
What does the equipment cost, is it covered by insurance?
If the patient has a hearing aid plan, we are able to bill for the cost of the equipment. In some states, coverage for patients under 26 still on their parents’ plan find that coverage is available. This varies widely from state to state, for example, Oregon guarantees coverage for hearing aids up to 26 years if on the parents’ plan (Blue Cross, Regence), but other states do not.
The cost for two units can range from $1800 to $3300. Insurance is also difficult to accurately predict due to things like regional caps, contracted deductibles, and it is important to investigate thoroughly with the help of our billing specialist, Tedi Ivy, prior to choosing to purchase the equipment. We have been able to bill several of the insurance companies for fitting fees which helps pay for the cost.
The units come with a 30 day trial period and a 50 percent deposit is required. Weekly check ins are required in order to exercise the 30 day return option. Voc rehabilitation will often cover these units if the person shows that the Misophonia is negatively impacting their job fulfillment. To date the Oregon Health Plan has not covered these instruments.
What resources are there for Misophonia?
Please join the Misophonia Association, www.misophonia-association.org to become active in the patient centered and managed organization. There is an annual patient convention and many supportive activities, the convention offers an amazing array of current researchers and speakers, the entire organization is volunteer run and an annual membership of $40 supports the activities and a part time Manager Position. There are many online resources that can be found on Facebook and in web groups for teens, adults, families, and more. Misophonia awareness is growing around the globe and local meet ups groups gather to help support and acknowledge, as well as offer coping ideas and positivity. Research is ongoing in the field and growing.