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 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.
Using Ear Level Sound Generating Devices for Misophonia
With 20 years of experience in clinical practice with Misophonia, I have found the use of ear-level sound generating devices to be extremely helpful in many different respects. I have prescribed and fit patients with various types of devices, including simple white noise makers which came out in the 1980s to the very sophisticated blue-tooth streaming audio ear gear that come in spicy colors and can operate via the iPhone.
What do these devices do? They use sound to help life ambient noise, can be adjusted to different frequency profiles to affect higher or lower pitches better, can be programmed to add emphasis or boost to different cochlear regions, or decrease the stimulation to those regions, can be adjusted for volume via the telephone or using buttons on the devices.
The use of sound has wide applications in the field of Misophonia, as often the person with the condition will complain about smaller or softer noises like breathing, sniffing, chewing or swallowing, as the increase in background sound decreases the noise-to-background sound ratio. In other words, the use of broadband noise or sound like waterfall or river, rain, wind, thunder, or ocean waves, interferes with the person’s capacity to detect and react to softer subtle sounds. This is of real benefit to the person with Misophonia who has auditory triggers.
I created the word trigger in the 1990s for use with this condition, which I called Selective Sound Sensitivity Syndrome, or 4S, and found that the broad band white noise generators stimulated 70,000 auditory fibers between the inner ear and the brain stem, then continuing up to the auditory cortical areas of the central nervous system, and this stimulation could be compared to a physical therapy approach of rubbing a painful arm vigorously which then significantly impacts pain transmission.
Stimulating the affected person’s auditory system was a pragmatic approach that was born out of tinnitus and hyperacusis treatment clinics like mine, as we were using this same technology for those two auditory symptoms in the 1980s. The initial applications of the ear level sound generators was not provided without regard to extensive follow up, 30 day trial periods, interviews and clinical appointments to check on improvement, fit, use, and benefits from the point of view of the patient, the family, and others.
In 2012, nine audiologists who were part of the Misophonia Provider Network, established in 2011, gathered data on 65 patients with Misophonia who were fit with bilateral sound generating devices and then followed for six months. The patients were fit with very similar units and the same scaling instrument, the Misophonia Assessment Questionnaire, the MAQ, was used to provide consistent rating of improvement over the period of time.
The results of this informal but coordinated study showed that of the 65 patients who data was collected, over 85% found that the use of the devices was beneficial. The positive responses included better function at home and at school or work. Patients report that they felt calmer when using the units, were less affected by trigger noises, felt much less reactive to trigger sounds and in addition, when they encountered the trigger noises, were able to use the devices with adjusting volume to drown out or affect the reactions. The units are nearly invisible and the miniature speakers insert deep into the ear canals so any other people around are unable to hear anything despite the volume being quite high at times in the wearer’s ears.
The units themselves are small behind-the-ear units which hide behind the pinna (outer ear) and a tiny clear tube winds around by the front of the ear and is nearly invisible. They are quite durable and several patients have been using the same sound generators for 15 years. The units can be refurbished endlessly by the manufacturers for a small fee with a new warranty. The manufacturers of these unit are located in the USA and in Europe, the quality is extremely high level and the sound and function is superb.
The newer generation of the devices come from the hearing aid world and include an option for direct phone audio streaming into the tiny behind the ear units. The response to these initial devices, the Widex Beyond is a great example, has been extremely positive. Rather than just creating a white noise or other steady state sound like pink sound, speech noise, Brownian noise, or other, these units allow the user to directly listen to any app or music that can be generated on the cell phone. The Widex Beyond works with the iPhone and needs a later operating system but there are the most amazing apps that can be downloaded easily and accessed right through the bilateral units.
The best app by far is one called Relax Melodies. It can be downloaded for free or fore $2.99 the app can be increased to include a multitude of potential sounds including just about anything you can imagine! And the best thing is that you can mix and match sounds to the situation, for example, if you are among a group of chip-eaters, you can select the options in the apps for campfire crackling mixed with other noises to best match the specific triggers. The app is easy to use and the user can discover many helpful sound mixes and volumes to really bury triggers and decrease the involuntary responses of Misophonia.
Recent scientific research by Sukbindhar Kumar revealed that there are indeed real and located the central nervous system, the brain, and show up as thickened myelin sheathing around the nerves. This kind of scientific research helps to demonstrate that Misophonia is indeed a physiologic condition that can be seen and therefore investigated and hopefully one day cured.
What I suspect is that the stimulation through the devices of the 70,000 auditory fibers provides a kind of reduction exercise for all other sounds, in a direct improvement for the misophones whose brain can tune into the incoming therapy noises and masking sounds, and therefore engage the neurons of the auditory system in a constant firing state, which is the highest energy state of the neural function. As such, when busy with firing and responding as well as attending to the incoming selected sounds, the neuron is therefore fully “occupied” and unable to allow over-focus on the incoming trigger. Users of this new technology have described the effect as ‘distancing’, or less provocative, with comparison to the unaided state.
The use of these devices has allowed wearers to expand their activities and exposure to triggers, increased confidence in their ability to tolerate more environments and restored function in some settings. Further development of instruments specifically for Misophonia is anticipated as audiology specialists who focus on Misophonia are comaring results and programming ideas on how to best adjust the amplification of the hearing aid components to enhance the incoming signals of the therapy sound choices.
For example, one audiologist is fitting the units with a significant increase in the lower frequency zones which makes the incoming noise, music, or sound into a more ‘bass’ tone with longer frequency waves for a good effect. Others have created an artificial hearing loss in the higher frequency zones which allows for a more intense higher pitched stimulation which makes the incoming sounds and noise, more ‘treble’ in nature.
Our work in this field stretches back over 20 years but just in the past year, are we developing the skills with new technology including hearing aids, and Bluetooth devices known as hearables, to assist those with Misophonia tolerate and enjoy a wider range of environments without as much distress and reaction.
Testimonials: Recent fittings with patients has resulted in the following comments from the users as well as family members.
I went out to lunch with my brother for the first time in five years. It was very nice….
I have never seen our daughter so happy. These units have changed her anxiety and distress levels significantly.
I wear them all the time when I am out and about, they are amazing at work and school.
It is hard to remember how I got along without these devices.