HYPERACUSIS CENTRAL

Amy’s Hyperacusis Story

by | May 6, 2022 | Patient Stories, Video Stories, Videos | 0 comments

Amy filming from her home office

Hello. I’m Amy. I have hyperacusis. I wanted to thank my friends at Hyperacusis Central for providing me this platform today to talk to you about my hyperacusis and what I do to protect my hearing. Unlike many people who develop hyperacusis, I didn’t have that traumatic hearing event. I have been hearing sensitive my entire life since childhood. And as I have aged, I am in my late forties now, my hearing has become much more problematic and noticeably so in the last decade. About five years ago, I reached the threshold of crisis in my hearing and I now have a new normal. Since that time of aggressive hearing protection, I got my hyperacusis diagnosis in 2018 from a hearing specialist and I have been adapting my life to my hearing for quite some time now.

When I first was diagnosed with hyperacusis I tried a lot of things that the hearing professionals recommended. I tried sound therapy and that I think did more harm than good. I tried cognitive behavioral therapy. I did quite a few sessions with that and that really didn’t dig in to what I needed. I made changes to my diet. I gave up coffee for a year and a half because there was the theory that maybe it was the caffeine and it wasn’t the caffeine.

What I found that works best for me is to control my environment to the best of my ability. And then when I cannot control my environment, I protect my hearing. When I first started down this path, I thought all I really needed was noise canceling headphones, and I could just wear them and I would be fine. And I learned very quickly that noise canceling headphones were inadequate for the level of protection that I needed. So I didn’t know about earmuffs. I asked some friends in the firearms community, what should I do to protect my hearing? And they said “earplugs, earmuffs.” So I started down that route of trying to find earplugs and earmuffs that worked well for me. I have a real collection now of earplugs and earmuffs that I use to protect my hearing.

Amy showing her collection of earplugs

I have foam earplugs. I have silicone earplugs. I’ve got custom made earplugs. These are just a part of my kit. I haven’t found that Musicians’ Earplugs have been very helpful for me, but I think that I need a level of protection a little bit more than what they can provide. Maybe if I started with them earlier, I would have been better off. I have muffs galore. I have a lot of pairs of muffs, and I keep them everywhere.

Amy showing her collection of earmuffs

I have them in the car. I have them in nearly every room of my house. I have them at the front door, at the back door. I don’t want to be far away from a single pair of earmuffs. And there are two types of earmuffs that are really available. There are passive muffs, which are these big chunky things that you can use to dampen the sound. And then I even have a pair of active noise canceling muffs. These are shooters earmuffs.

The first time I used the Walkers Game Ears, I was in a public building waiting to get into a meeting, and there was a fire drill and there was an alarm. These are designed to noise cancel a gunshot and it canceled the fire alarm. It saved me that day. So there are different levels of protection with earmuffs. There’s, I’m sure, an entire body of research on earmuffs and hearing protection. But combining earplugs with earmuffs and then choosing the right muffs for the situation that you’re in has been critical for me protecting my hearing in environments that I can’t control the noise level.

I want to be very, very real with you right now. If you are experiencing elevated volumes or pain associated with volumes or frequencies. If you are recently diagnosed with hyperacusis or you are currently trying to adapt your life the best you can because you know you have hyperacusis, I want to reassure you that this is real. You didn’t make this up in your head. What you’re experiencing is real. And despite the advice that a lot of hearing specialists provide about what steps to take to “cure your hearing problem,” you know your body best. You know your health and what your experiencing and the detriment that sound has on you better than anyone. There is, unfortunately, a lot of gaslighting in medicine, and I think the gaslighting in our special health need is very prevalent.

It’s very hard to endure everything we’ve had to give up in our lives in order to feel a modicum of health. We had to give up live music and theater and the movies and restaurants and bars and visiting with our friends for coffee. We’ve had to give up a lot to maintain our health. And that really takes an emotional toll.
I want to reassure you that you still are a productive member of society. You’re important. Your life is very valuable. And even though you’ve had to make changes to what you’re doing and how you interact with friends, family, colleagues, you’re an important person. You matter. So one day I hope that we will find a cure.

Amy

To see Amy’s video story, visit our YouTube channel. Closed captioning included.

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *