Now hear this: Condition has patients on edge over noises

Sounds that typically go ignored by so many spark anxiety and fits of rage for some. It’s a condition doctors and patients are just beginning to understand – and now they want you to hear about it.

The cacophony is all around us, but for some it’s the smallest sounds that cause a huge reaction.

Beverly Agdern, misophonia patient: “Hearing him eat that banana and the smacking and the chewing, caused me to panic and run out of the room.”

What began at the age of 10 with an inexplicable reaction to the sound of her father eating grew into a predictable and anxiety-ridden pattern for Beverly Agdern.

Beverly Agdern: “It became chewing, heavy breathing, sniffling or coughing, tapping noises. Over the years I realized these triggers are growing and also becoming more severe, causing a more severe reaction.”

It’s called misophonia. The translation — hatred of sound. But the name is a bit misleading. It’s not that Beverly dislikes sounds, it’s her visceral reaction to certain sounds.

Beverly Agdern: “It’s a lightning bolt of adrenaline and rage. It really is the quick decision of, am I going to physically harm this person or I need to get myself out of the situation immediately. I have not acted physically. I’ve definitely imagined myself doing it. In my head I can see myself punching someone in the face, shoving them out of the way.”

Rage is a common thread among the growing population of misophonia patients audiologist Jill Meltzer treats.

Dr Jill Meltzer, audiologist: “It was a 12 year old, a 20 year old and a 40 year old, and the stories were so consistent. It was often sounds around the face, chewing, slurping, swallowing sniffling, throat clearing. How I’ve often described it with patients, it’s like your radar is on high all the time. That’s exhausting.”

Beverly Agdern: “As soon as I realized that there was a community of people out there that had misophonia, I instantly felt so validated over the past 20 years having these reactions, this anger, this rage. I knew that, first of all, I wasn’t alone, but second of all, this is a real thing.”

But there are few effective treatments. Some patients have tried anti-anxiety medications with little or no success. The best coping strategy? Avoiding the triggers and masking the sounds.

Dr Meltzer: “Using sound to partially mask some of the offensive sounds. Some of these devices can be ear level, meaning it looks like a little hearing aid but what it can put out is this broadband ‘shhhhhhhh’ kind of sound.”

Beverly Agdern: “Ear phones are my number one don’t-leave-home-without ear phones because blasting music or white noise is really the only thing that can avoid that rage that I get from hearing the noises. At work I know the people around me, their lunch cycles, their snack styles. Am I going to have to leave my desk for a while? Am I going to have to go to the gym when they eat? It’s constant work every day, and that is really the huge frustration of living with misophonia.”

So little is known about misophonia, but doctors do believe there is a neurological component – functional MRI’s may help shed light on changes that occur in the brain. Beverly is speaking out with the hope she’ll reach others suffering with the disorder. For more information, check out the links below:

http://www.misophonia-uk.org/
http://www.sound-rage.com/The_Book.html http://misophonia.yolasite.com
There are private groups on Facebook for:
-Misophonia Awareness
-Misophonia Support Group
-Parents of children with Misophonia
-Misophonia: Coping and Solutions

You can connect with Beverly at misophoniaawareness@gmail.com
Dr Jill Meltzer is an audiologist at North Shore Audio-Vestibular Lab; (847) 432-5555 or www.nsavl.com

6 comments

  • Braedon Szolomayer

    I live with this…. Its a real thing, and people hardly understand what it's like. This article does a good job of explaining it a little, but living it is so dramatically different. Prayers out to anyone else dealing with this… Life is difficult.

  • Annette

    I am the mom of a 22 year old Misophonia sufferer. I wish I knew of other parents out there who have a family member dealing with this. Dr. Meltzer is a wonderful doctor and while her options were few, she has followed up with us and kept in touch for the latest from organizations studying the condition. Thank you for running this story.

  • Kat

    I do not understand why you played the sounds that trigger misophonia in the video? It makes it very hard for those of us with misophonia to watch and kind of defeats the purpose. You are inadvertently alienating the people who suffer from it by making uncomfortable noises. It was hard to watch (like nails on a chalkboard) but I appreciate your good intentions. Hopefully someone will find a cure.

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