4S - Treating, Coping, Dealing with Misophonia "Hatred of Sounds"
Dealing with Misophonia
Long before I ever heard of misophonia, which literally means hatred of sounds, I knew there were certain sounds I needed to avoid. The sound of someone chewing loudly, even the thought of that sound, elicits feelings of anger that can quickly grow to rage.
I remember driving in the car and seeing someone drive through the intersection, chewing as loudly as I have ever seen anyone chew. I blurted out "Did you see how loud she was chewing? If I were in that car I would have thrown her out the car while we sere still driving." Instant Rage.
I wouldn't really have done that, or at least I don't think I would have. The anger I feel is very real, and although I can control it, the fight or flight impulse can be so strong at times. My reactions are not nearly as strong as those of my stepson, we will call him Eli. Trying to help him this summer is how I happened on misophonia, and discovered what my problem has been my whole life.
If you think you may have misophonia also known as 4S - Selective Sound Sensitivity Syndrome, Click this link to a Hub I wrote that explains in more detail what misophonia is, and the symptoms and triggers that are associated with 4S.
Misophonia is new and as such little is known about it relative to so many other conditions. There is no cure, and treatments are experimental and limited, but options are greatly expanding with recent awareness and publicity.
Coping with Misophonia - Know Your Triggers
Knowing your triggers, and even having a written list you can give to both loved ones and people you have to spend a lot of time with, can greatly reduce your exposure to those triggers.
Eli who is 15 and his two brothers came to stay with us for the summer. Upon their arrival his 9 year old brother, in his infinite kindness, took their father and myself into a room and proceeded to list all of his triggers. The list got to around 50 words and objects before we said we got the idea. Eli has, among other things, the most severe and self-inflicting reaction to the anger and anxiety caused by his misophonia, I have seen or read about. It may be exacerbated by his OCD, but in any case he has a host of both auditory and visual triggers that elicit a strong and violent reaction. When triggered he involuntarily hits himself violently in the back of the head and fiercely shakes his head forward, then snaps it back like a whip. To see a loved one suffer so much is hard, but having a mild case and knowing the rage I have makes me feel for him even more.
Noise Cancelling Headphones are Crucial
Misophonia - Limiting Your Exposure to Triggers
Avoid situations, if possible, that you know you will be over exposed to triggers. Headphones can go a long way in avoiding triggers as well.
During the summer Eli got very good at removing himself from situations that were causing him distress. We also avoided situations we knew would be very difficult to tolerate. One time at church a guest speaker was incessantly smacking into the microphone as he spoke. Eli quietly removed himself from the building and was waiting by the door when we got out.
The Power of Noise Cancelling Headphones
Eli is still in school, high school in fact, which is a difficult place to have any sort of social abnormalities, let alone those that you can't hide. For years Eli would be lucky to go a week with out a violent out burst caused by repetitive exposure to triggers. Finally in seventh grade he had a teacher that allowed him to bring his headphones to school. For the first time Eli excelled in school. It helped that he was intelligent, but the real difference is he could concentrate even if just with his eyes. What's more, he made his first full year with out getting suspended.
For More Info Get the 4S Handbook
Potential Treatments for Misophonia
The Misophonia Management Protocol (MMP)
This protocol was developed by the Misophonia Audiology Focus Group. This group formed itself under the directions of Audiologist, Dr. Marsha Johnson in July of 2011. Holding quarterly virtual conferences and workshops, they share process, protocols and study particular cases and outcomes.
MMP is based on a scaling assessment developed by Dr. Johnson, the Misophonia Reaction Questionnaire (MRQ). The Misophonia Management Protocol is made up of two parts and requires a follow up that takes place over 12 - 24 weeks using the MRQ to scale improvement.
Part 1: Patients are exposed to sounds to help limit or eliminate the connection between the sounds and the reaction generated by their nervous system. This is a very specialized field and must be implemented by audiologists with proper training.
Part 2: The second part of this newly developed protocol is cognitive behavioural therapy with a qualified professional, for 6 - 12 weeks focusing on the area of misophonia. The professionals in charge, according the the MMP, should have experiences with OCD, phobias, anxiety, and adolescents when possible.
Regional providers have been using the MMP since September 2010, and results are expected to be published in September or October of 2012.
Neurofeedback or EEG Biofeedback
Similar to the first part of the MMP, neurofeedback aims to eliminate the reaction to the trigger sounds. This process was not developed for 4S / Misophonia, but shows progress for many other neurological conditions and disorders. By measuring brain activity with an EEG the peaks and valleys, of activity are displayed. The video is shown to the patient and they try to control the brain waves almost like a video game. It links your conscious with your subconscious and helps give greater control over the reaction. There is no evidence linking this treatment to releif from 4S, but it deserves a notable mention.
NLP or Neuro-Linguistic Programming
Like the option above, there is no solid evidence suggesting this will definitely work. However because this condition is so new, and NLP is painless and involves no drugs if you are going to experiment this is as good a thing to try as any. NLP is similar to the aforementioned
treatment with out the visual monitoring. By "rewiring the brain" one may find relief from situations that previously caused a fight or flight response.
When Eli was in the hospital he has a nurse that was studying neurology and psychology. Each time Eli would have a reaction the nurse would start to tell a joke, and almost instantly Eli would stop mid reaction and try to figure it out. When the nurse was asked how he knew to try that he said is was like NLP, I am trying to get him to rewire his reaction from what it is to thinking of someone else.
I am no expert in this area, and there are very few who are. Many doctors and even neurologists have not heard of misophonia. As it becomes more widely known more treatments will surface. Hopefully we will learn more soon as reports from the initial MMP patients becomes available. I will continue to update this hub or add new hubs about this subject in the future.
For a list of people in the Misophonia Audiology Focus Group and regional doctors that can offer much more help than I could ever hope to please Click Here