Useful information on Misophonia, from the Portland conference

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.

Functional MRI

Functional MRI

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.

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28 responses

  1. This is a really great blog, and I’m so happy that people are putting a name to this affliction after finding sites like this. I was wondering if you had an knowledge of the relation between misophonia and sensory processing disorder? My psychiatrist thought that SPD fit me, and through casual studying of it, it seems somewhat similar. The difference is that misophonia is specifically sound(though also sometimes visual), whereas SPD can be present in multiple senses. That being said, it’s important to note that my psych had never heard of misophonia, and didn’t seem to consider it much at all, so it may have just been because of that. I know that I am very finicky about different sensory inputs; I wonder if that is something that misophoniacs share? Sorry for rambling!

  2. I was so glad to find your website. I have been trying to understand what is going on with my 15 y/o daughter and when I did a search on her symptoms discovered that her symptoms have a name. What a relief for both of us. I appreciate the information you have shared, much is resonating with us and what we are experiencing and it is helping me understand her, but most importantly she is feeling validated. Thanks again.

  3. Wow. I am not alone.

  4. Thank you so much for sharing this. I have spent all of my life (43 years) suffering from this and also Misokinesia and only today I came to know that these are identified disorders.

  5. […] here’s the post I wrote about last year’s conference. It looks like this year’s lineup of speakers will […]

  6. I’m only 15 but I think I been suffering from it since I was 7. Loud breathing annoys me. I start getting panicky and angry. I try cover my ears when I’m sitting beside someone, I always feel like crying. I end up having to remove myself before I start screaming. It effects me in a lot of ways,I can’t go to sleepovers because I get angry and panicky when I can’t sleep because of loud breathing. My parents don’t do anything about it. They know it’s not normal but they don’t really care. It’s gotten so bad now that I can sit in the same room as my dad. I also get enraged when people constantly sniffle and chew loud. I’m not sure if I have misophonia or not.

  7. Any word on the 2014 Conference? Any more blog posts coming?

  8. Erickson Winter | Reply

    I fell out of the hyperacusis.net discussions for a bit because I felt like “live with it” was where the conversation might end, although found that knowing others was immensly helpful. I’m really glad to see the discussion and exploration continue and hoping there will be another conference! Anyway, thanks so much for your posts, I’ll be sure to jump back in to the discussion where I can!

  9. I had no idea there was a name for this! I’ve always physically cringed with certain sounds and find it hard to be around people making certain noises…even crickets sometimes set me off. So nice to know I’m not just weird. (altho I am that too! )

  10. thank you so much!

  11. This time with a correct email address. 🙂

  12. I’m with all the others feeling like I finally understand myself a bit better now that I know others are going through the exact same thing. I appear to be a textbook case. Is there anyone doing research in the San Francisco area I can hook up with?

  13. I found out a few years ago, that my ‘rage’ had a name! This is such a relief!! I’ve been trying everything I can to get help with my ‘problem’… I’ve been to see therapist, psychologist, which didn’t help at all. I am now seeing someone for neurofeedback, and for hypnosis. I’m very skeptical that it will help, as I’ve spent over 600$ so far, and nothing’s changed at all! I’m simply doing like most of you probably, and just ‘living’ with it… I HAVE to put my headphones in when my one co-worker takes out her gum… ughhh… I feel like she chews it as if she’s got 5 hubba bubba’s in her mouth! And well, of course my family think I’m crazy and just looking for attention… it hurts so much.. because I’m such a loving, social person… and I end up just avoiding certain family gathering and certain events because of just this. When i day dream.. I think of the day that all of this would be gone… and I can just sit there.. with anyone, eat with anyone, and not always be looking for the next person that will piss me off.. Anyways.. if anyone can shares the ways that they use to cope, it would be greatly appreciated.

  14. I am so happy my daughter showed this to me, I really have been starting to think I am just built really moody, something so simple as toast, chips etc. The other day I actually had to leave the waiting room at my doctors because someone started eating an apple. It enrages me so much, I can’t even explain the anger…I just don’t feel right, I really thought I was the only one. The first time I ever noticed it was on a werthers candy commercial where the Grandfather gave his grandson a candy and he unwrapped it and put it in his mouth…I hated that commercial, the crinkling of that kind of paper and the candy hitting against his teeth. It does seen to be getting worse with more triggers coming the older I get.

  15. I’m so glad to know I’m not alone! At the moment I can hardly stand to sit in my own living room because of the kids outside. I think my family thinks I’m just bossy, moody or downright bitchy, they have no idea what the rage is like.
    It doesn’t help that I also have misokinesia and am always telling my husband to sit still. Sometimes I feel like I’m going to lose my mind.

  16. Reading this has been very moving and validating. I’ve been suffering from this disorder since I was 12 years old and I would love to understand what is happening in my brain for my sake and for the sake of all my relationships. I would live to be a part of any kind of research in this field.

  17. My son who is a second year law student, and on law review at William & Mary Law, is writing an article to hopefully get published in the law review, on Misophonia and the ADA. He and I both suffer from Misophonia. I think this could be very helpful to all of us in helping shed some additional light on Misophonia to the medical community and the public at large.

  18. I was thrilled earlier this year when I learned – finally – that my condition not only has a NAME but that many others suffer too. I have what I consider to be a horrible case that has grown worse as I have gotten older to include MANY sounds and even visual triggers. And earplugs are with me constantly. I am eager to learn all I can about this condition and more importantly find out if there is any help out there for me/us. Thanks for posting – my sister lives in Portland and sent me a picture of the conference sign. 🙂

  19. Are all of the trigger sounds human-made?

    1. No. I know that some people with misophonia are triggered by the sound of barking dogs.

  20. Any idea how to get testing accommodations for this? I have been putting off grad school because I am terrified of taking the GRE with people who may be chewing gum etc.

    1. That, I don’t know, sorry. I took the GRE a few years ago. I brought ear plugs and headphones to wear over them. Luckily, there weren’t many people at the testing site where I went.

    2. I recently took a standardized exam for my graduate program. It was in a testing center and I was very nervous about how to take the exam in peace. The testing center gave me ear plugs (I was not allowed to bring my own) and then I also used their noise cancelling headphones. There were many different exams being taken so while mine was only multiple choice and I was clicking through with the mouse, another person was typing several essays and the keyboard clicking was very distracting. I also utilized taking small breaks. So, to answer your question, I didn’t get testing accommodations but maybe this will be helpful in knowing what to expect!

  21. It’s so good to hear this condition is starting to get some recognition. Looking forward to the video of speakers

  22. Michael Lawrence | Reply

    Excellent, thank you!

    I’ll be passing it on. Others should do the same with family, friends, employers etc.

    Mike

    Sent from my iPad

    >

    1. Hi Michael, my daughter has misophonia and will be going to school near Cedar Rapids this fall. Did you find that the NFB you did with Dr Lyle was worthwhile?

  23. Did you know that Dr Sukhbinder Kumar in London is working on a fMRI study? See:
    http://www.misophonia-uk.org/

    1. No, I hadn’t seen that. Thanks for the info!

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