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 finally went to my misophonia appointment, where I received some good news, and some bad news. Let’s have the good news first. As I mentioned in a previous post, I wasn’t sure what to expect, and this was my first time seeking help for misophonia.
Although misophonia is currently incurable, I learned about cognitive behavioral therapy, as well as a new technology I wasn’t aware of for blocking trigger noises. Apparently, people with misophonia generally do about 12 visits with a therapist to go through the CBT, which helps them develop coping strategies for dealing with trigger sounds.
I could definitely use that. The bonus is that CBT can be done with any therapist, as long as they get educated about misophonia as they are working with you.
I have a doctor appointment with my primary care physician this week, and I plan to ask her to refer me to a good cognitive behavioral therapist so I can try to start that. I haven’t checked with my health insurer to see how much of that therapy would be covered, though. That might be an issue for me if it costs too much.
Then there’s the bad news. Sort of. I also learned about in-ear white noise generators. They were pretty amazing. They are like hearing aids, but instead of helping you hear, they help you NOT hear your trigger noises. They emit white noise into your ear, which helps drown out trigger sounds while giving your ears something constant to engage with. They also can be turned up and down with a small wheel that hangs over the back of your ears, and the device is nearly invisible.
The bad news is they cost $2,400. So… that won’t be happening for me any time soon. If someone with misophonia can afford this type of white noise generator, I’d be really curious to know how they work for you. Would they really drown out all the triggers — even loud pops made by chewing gum, or a metal spoon clanking against a ceramic bowl? I’m a bit skeptical.
I found some less expensive white noise generators online, but some appear to block the entire ear canal; they seem basically like an ear plug with a white noise speaker in them. Those seem cool, but the beauty of the pricey in-ear white noise generator is that it doesn’t block the entire ear canal — meaning you can still hear the noises you want to, such as a friend talking to you.
The closest alternative to the $2,400 model I found online costs around $400 for both ears. I am not sure whether they are near the same quality as the $2,400 model recommended by the misophonia specialist I saw.
Here are some other models I found online. I honestly have no idea how well they work, but I figured I pass the information along anyway.
I also had my hearing checked and discovered I have impeccable hearing, which is fairly common for people with misophonia, according to the specialist I saw. I was surprised by this because I’ve spent many years blasting music into my ears through headphones, and I’ve attended countless concerts that have left my ears ringing for hours. I never cared about damaging my ears, and I secretly hoped I would make myself slightly hard of hearing as a way to help me escape my condition. I guess that didn’t work.
I’ll post an update once I know about any cognitive behavioral therapy sessions I might have. Thanks for all of the comments on my posts. It’s been really great hearing other people’s experiences with misophonia.