HYPERACUSIS CENTRAL

Tanya’s Hyperacusis Story

by | Jun 7, 2024 | Patient Stories | 1 comment

My name is Tanya. I’ve had hyperacusis for over four years now, but It probably started much earlier. I remember even ten years ago when I was working in an office and people were shutting doors, it seemed loud, but it didn’t cause me any big discomfort.

The only sounds that bothered me for more than 15 years were the noises of my loud neighbors. For the last 15 years, I’ve moved to more than 20 different apartments in search of a quiet place. But I was very unlucky because everywhere I lived, some loud neighbors didn’t sleep at night, they moved furniture, and had parties. It was useless to ask them to be quiet, so I’ve had problems with my sleep for more than 15 years now. I somehow adapted to this situation, but all in all, it has had a bad impact on my nervous system.

About four years ago there was a period of time when all sounds seemed too noisy, yet I thought that it was just loud because it was loud. But all the people around me said it wasn’t loud for them. Then my sister told me she found out about a condition called hyperacusis, so I read about it online and understood that I had it.

I started to see doctors (neurologists). The first doctor I went to performed an experiment: he brought some instrument that produced some terrible sound that was very loud and painful for me, so he concluded that I had hyperacusis. But he didn’t give me any recommendations on how to deal with it. So I continued to visit different doctors and look for some treatments. But nothing has changed, and my condition even deteriorated. 

Now let me describe my symptoms because my hyperacusis is kind of strange, and it’s in some ways different from the type many people have described. Around eight years ago, I think I had loudness hyperacusis, because any loud sounds made me feel uncomfortable, and a little scared, but with no pain. And about five years ago I had a situation where I strained my back too much, and it provoked problems with my neck, and back, and caused headaches that unfortunately have become chronic.

About four years ago, pain hyperacusis started to develop. If someone banged doors loudly, or if a person shouted in the street, I immediately felt fear, but still no pain. But as time went by, and my headaches progressed, I started to feel immediate pain in my face, and sometimes in my back when hearing a loud sound. And for the last year, the pain also has been affecting my right ear. But it’s not a stabbing or burning pain like some people describe. It’s more of a nagging kind of pain (only several times recently I’ve felt a kind of burning pain). I have this kind of pain almost every day, and if I am exposed to loud sounds, it increases a lot. Even if I don’t have a headache on a certain day, but hear a loud sound or several, my face immediately starts to hurt. 

Also, the severity of pain differs from day to day. Sometimes I’m more susceptible, sometimes less. The bad thing is that for the past year, my hyperacusis has deteriorated. Formerly, I could easily talk with people (unless they shouted or laughed loudly), and now even a normal conversation, the crinkling of a plastic bag, or the sound of people walking on the floor in the adjacent room, is scary, loud, and hurts.

I think if I healed my back and headaches, then my hyperacusis would most likely not provoke so much pain. But so far I haven’t found a good doctor to find a suitable treatment. I have done several MRIs, including of the inner ear. The diagnosis was that I have a vasoneural conflict, which, as a doctor explained, might provoke headaches. Personally, based on the sensations, I’m sure that my hyperacusis is related to brain dysfunction and nervous system peculiarities.

Last year when I moved to a new room in an apartment, it was the first room in my life with no neighbors above or beneath me. But the windows overlooked a very loud road with never-ending transport, it was so terrible that I couldn’t stay in my room at all! I went to sleep after 2:00 or 3:00 p.m. when buses and cars were less noisy, and when I woke up, I took my belongings and spent the whole day in the kitchen (as it overlooked a quiet backyard). But I had to spend some time in the room anyway, and unfortunately, after having lived there for three months, my headaches became worse; apart from the nagging pain it started to be shooting pain from time to time. Presently, I live in a village with my parents, but it’s still very noisy for me anyway, and not better than in the city. In the city there were cars, but here, the dogs’ barking is killing me.

Unfortunately, I’ve had a very bad setback recently, when some people shouted at me very loudly for about five minutes. After that, I had very strong and painful headaches and my face hurt a lot, worse than before; it even hurt if I spoke for 10 seconds. Thank God that it now has improved. But what’s worse is that this severe and constant stress caused me to have heart issues, and psychological problems, and even caused my front teeth to be abruptly destroyed. I don’t know how this could happen to my teeth, but I went to a clinic, and as it turns out, the stress caused by the terrible sound destroyed my teeth. To say that I’m very upset is an understatement.

I have tried to take antidepressants, but they have not helped (perhaps I need to try some others). Also, I use pain-killing lotion on my face every day; it alleviates the pain a little bit, but I’m so tired of its alcohol-like scent! Additionally, for the last few weeks, I’ve been reading a lot of literature and confessions about sound therapy as a treatment for hyperacusis. Some people said it helped them improve, while others explained that it caused their condition to worsen, so I am undecided about what to try.

The only way I am able to live is by constantly protecting myself. Every day is a struggle, and sometimes it makes me absolutely exhausted. The only thing left to do is to try and somehow survive and hope that eventually, my situation will improve. In the meantime, let’s all support and pray for each other!

1 Comment

  1. Bob

    You want to start a quiet community with me?

    Reply

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