I attended the first-ever conference for people with Misophonia about a week ago in Portland, Ore., and I’m still digesting a lot of what I learned. Here’s a brief list of some of the takeaways from the conference:
Misophonia.com has a letter to physicians that you can print out and bring with you to the doctor. That could help a lot and save you some of the grief of having to explain your condition every time you see a new doctor. There’s also a letter you can use as a template for talking about misophonia with family and friends.
It is helpful for people with misophonia to make their home environment as inviting as possible. Flood the rooms in your home with sounds that you enjoy, which will help mask your triggers. You could play music or run a fan or a white noise generator, for example.
Family members living under the same roof could benefit from writing a contract with their family member who has misophonia. For example, a parent could write in the contract that they will try to stop making certain trigger noises around their child (no gum chewing in the car), and that it is OK for their child to get up from the table during dinner. The child could agree in the contract to refrain from using abusive language toward the source of a trigger, and to be up front when a sound is triggering him or her.
Misophonia trigger sounds are not something a person can get used to through typical exposure methods. In fact, there is some evidence to suggest that trying to endure trigger noises can make the misophonia worse and lead to new triggers.
Ear plugs can make misophonia worse. They cause your ears to work harder at trying to hear the sounds around you, and when the ear plugs are taken out, your hearing could be even stronger than before. This can lead to noticing more soft sounds and developing new triggers. Playing white noise or music through headphones or ear buds is seen as a better alternative because it floods the ear with sounds to digest rather than leaving the ear in search of sounds.
Are you a medical researcher? Help! People with misophonia and their families are desperate for someone to study the brains of people with misophonia. A functional MRI would be most useful to us at this point, because we’d like to know what parts of our brains are firing when we experience a trigger. Blood tests also would help determine whether the condition is genetic. There is plenty of anecdotal information to suggest that it could be.
People with misophonia tend to also be highly sensitive people. People with this personality trait tend to pick up on subtleties more easily and can easily become overwhelmed by events around them. Here’s a test you can take to determine whether you have the highly sensitive personality trait. People with misophonia also tend to have some obsessive-compulsive tendencies, but not necessarily have OCD.
The American Psychiatric Associations’ fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (called the MSD-5) does not include a listing for misophonia, unfortunately. However, some misophonia patients are starting to use the ICD-9-CM diagnosis code 388.42 for medical reimbursement claims. It’s the same code used for a similar audiological condition called hyperacusis.
Misophonia is currently considered an “orphan disorder,” meaning there are fewer than 200,000 identified cases of misophonia. That could certainly change as more people come forward to seek help for the condition.
People with misophonia find that their reactions to trigger sounds are worse when they happen to be stressed out, tired, hungry or hormonal. Reducing life stresses can help make things easier for people with misophonia, but it won’t eliminate misophonia. It’s also helpful to try to think positively about the person making the noise that is triggering you, though it won’t make your misophonia stop.
An audiologist working for many years with misophonia patients said her patients tend to be intelligent people who were good students in school. Those attending the conference last month in Portland seemed to reflect that trend. They were articulate and many had advanced degrees and successful careers. At the same time, many of them had left those successful careers because their work environment had become unbearable.
I found that final point particularly troubling because it suggests that there are qualified members of the workforce in our society who are not able to use their talents and give back to their communities because of this disorder. Finding a solution for misophonia and making sure workplaces are willing to accommodate people with this condition could go a long way, and not just for those who have misophonia.
The speakers at the conference were all video recorded. From what I could gather, the videos will be made available soon, and the Misophonia Association may charge money for the videos to raise funds for the association. Watch this website for more information.
I ordered some musicians earplugs online yesterday in the hopes that they will be more effective than the foam earplugs I currently use at work. Someone suggested musician earplugs in the comment thread to the New York Times article earlier this week about misophonia.
I should get the earplugs in the mail this week, and I’ll write a review of how they work. I’ve noticed my foam earplugs become less effective over time, and it’s not that hygienic to reuse them over and over again. My hope is that these new earplugs can be washed and reused, and that they will block out a lot of the soft sounds I hate while still allowing me to hear people clearly when they talk to me.
Also, I found a Misophonia Support tumblr (which has linked to my blog – thanks!) that informed me the Today Show did a segment on misophonia this week following the New York Times article. You can watch it here and I’ve also embedded the video below. Please be aware that a lot of the b-roll and natural sounds added to the segment are very triggering — a person eating an apple, a woman chewing gum, etc.
There is a great interview after the segment that filled me with hope to watch. The television journalist was treating the interviewee with misophonia in a respectful way, with belief and understanding. After receiving very little respect and understanding throughout my life in regards to my misophonia, this was an uplifting sight.
I was a little irked by the phrase “for people who think they have misophonia” when the journalist described the Internet support groups that exist. But all in all, I enjoyed the Today Show’s coverage of misophonia. Hopefully this week does not simply represent misophonia’s 15 minutes of fame, but instead is the beginning of a movement to help the medical community realize that this is a serious condition for many people.
Here’s the video on YouTube:
Today at work, a colleague of mine who sits a few feet away was chomping down on some candy, so I instantly put in my earplugs. Another coworker came over to discuss something important with me. I had to remove my earplugs and talk to the woman who had come over. The entire time, I was agitated by the sounds going on around me, and I think that irritability came out while I was talking. I was short, I didn’t fully listen to what was being said to me and I tried to end the conversation as soon as possible. I was experiencing several emotions: intense anger at the person eating candy, worry and fear that I could not immediately escape the noise, and guilt that I was taking my anger out on an innocent bystander.
It’s just another example of how misophonia can make everyday human interactions difficult.
This is just a quick post for anyone with misophonia who wants to help contribute to the research effort about this condition. Click here. It looks like the survey will be used to find any commonalities between those who have misophonia and to create data to show that this condition does indeed affect many people in a very distinct way.
I just took the survey and it lasted about 10 minutes. You also can sign up at the end of the survey for an email alert for when the findings are released. I’m not sure how long the survey will be available.