Forums » Smalltalk » AMA: Living with Misophonia

Misophonia is a disorder in which certain sounds trigger emotional or physiological responses that some might perceive as unreasonable given the circumstance. Those who have misophonia might describe it as when a sound “drives you crazy.” Their reactions can range from anger and annoyance to panic and the need to flee.

It came on when I was in HS, so when I was around 15. Sounds which had noticed periodically but not enough to cause an issue before caused stress, anxiety, panic, tears. The sounds of my family chewing when all I wanted was a family dinner. The sound of that kid in class chomping away at their gum, even hanging around my uncle who has a constant frog in his throat which needs to be cleared. It isn't simply noticing theses sounds, I am incapable of not hearing them. They stand out like a piercing siren among the rest and when they occur, it's all I can think or focus on to a point of obsession until the sound is gone, or I remove myself.

I don’t know how it is for most people but for me what had really only been an occasional annoyance I’d notice every now and again became a nightmare. One that I wasn’t allowed to speak out against because what I was experiencing ‘isn’t real' in the eyes of friends and family. To them it was just me being overly sensitive so I learned quickly to keep my mouth shut. It wasn't until I was already in my 20's that I came to understand what this was, that I wasn't crazy, that this wasn't my fault, and seek support in creating safe spaces away from trigger sounds.

I'm sorry you have to deal with that, but at least now you've come to an understanding as to why certain sounds distress you. I can sympathize with people not taking your mental health seriously and just writing it off as somebody being ”overly sensitive.”

In your research to find out this discovery about yourself, have you learned if it's possible to outgrow this?

I'm very sorry to hear that. Everyone should take stuff like this serious. But I'm very happy you found out what it was!!

A known cure for misophonia does not currently exist, but several treatments for misophonia have proven effective in lessening the condition’s severity to improve the person’s quality of life.

Tinnitus Retraining Therapy (TRT): Although primarily used to treat people with tinnitus and hyperacusis, TRT has also proven successful in treating people with misophonia. This is a process of slowly attempting to rewire the association of trigger sounds with something more pleasant. However this therapy has shown progress in some, but a worsening of symptoms in others. Cognitive Behavioral Therapy is often also used along side TRT to improve overall quality of life.

The disorder was originally termed in 2001 by Pawel and Margaret Jastreboff while working in their tinnitus and hyperacus clinic at Emory University in hopes to distinguish it from hyperacusis. Because of this it isn't widely acknowledged or known in healthcare and many options for help have yet to be explored/ discovered. From what is known, it is caused by information being misinterpreted within the central nervous system. When attempting to get hep, many who suffer from misophonia are turned away due to a lack of knowledge of treatment, or even existence of the disorder itself.

However, I have hope for the future, more research has been started for misophonia, as well as general awareness and recognition of it being an actual disorder. While there is nothing to say this will ever go away as misophonia is lifelong, I feel hope that the future may bring understanding. Perhaps even relief. Many with the disorder feel embarrassed when talking to a GP and don't speak up about what they experience, like myself, they have lived through a time when what they felt wasn't a 'real thing' even in the eyes of doctors. With more awareness comes more knowledge, and more people stepping forward to speak on their experiences.

One day, there will be a treatment, but until then most who have misophonia turn to sculpting their environment around avoiding trigger sounds the best they can. Having a place that they can escape to when they become overstimulated. Vigorous exercise, a healthy diet, a regular sleep schedule, sound protection (when needed), and support from friends, family and community are proven to help reduce the stress caused by trigger sounds.



Thank you for your care, it's very sweet

Hey! Thanks for holding this AMA!

I think I have misophonia, as if I'm especially stressed, tired, or agitated already, sometimes just hearing people talking or crumpling stuff or chewing is just too much input and I need to leave or put on headphones or something. I can also be pretty hyper-alert outside of that.

How do you go about coping with your own misophonia? I know I've tried noise cancelling headphones, earplugs, and if I can leave the situation, doing so. But if there are other options, I'm curious to know!

Thanks so much for sharing your experience.

I can't speak for everyone, but for myself removing stressors that would cause me to be in a frustrated state to begin with help immensely. It's easier to think of ways to remove myself from a situation when I'm not already clouded. Getting a good night's sleep, eating well, meditation, and communicating my feelings and discomfort with the people around me in a respectful and amicable way I find is really the best thing to do. I wear high-density earplugs at night to block out sounds that would grab my attention and use white/ background noise during the day to help make other sounds less noticeable. However sometimes there are situations in which I cannot excuse myself, and cannot get away. In these situations using stress reduction techniques like breathing exercises can sometimes help, but really it's different for everybody. In times of anger, fear, frustration, and stress, it's important for me to remember that this is not anyone's fault snd put myself in their shoes. It is not the responsibility of others to accommodate especially if they don't know something bothers me, but that does not mean that I cannot request politely and explain my situation. It's not my fault if I feel this way, but it is not other people's fault for being human.

When I was a teenager I was very angry all the time and I channeled a lot of that in to exercise. Unfortunately one could not exercise 24/7 even though it is very effective. Since then I've learned other techniques and outwardly appear/act like a calm level-headed individual even around most trigger sounds because I never want to allow my misophonia to control who I am and how I interact with others. That is something that I have spent years cultivating in order to better foster relationships with others. I find it's much easier to explain that something is bothering me if I'm not coming from an overly emotional place. Finding ways to distract myself and channel my stress makes life a lot easier.

However, there are days in which interacting with others is very difficult, and on those days I understand that it's important for me to communicate what is going on with me and why. Making sure that my friends, family, and relationships know that this is not their fault as well as understand (if they want to) how it's possible to help to be supportive.