HYPERACUSIS CENTRAL

Danail’s Hyperacusis Story

by | Dec 11, 2023 | Patient Stories | 6 comments

Hi, guys! My name is Danail. I am 30 years old from Bulgaria and I wanted to share my hyperacusis story.

Danail before hyperacusis.

Ear Problems

To begin with, I was never keen on going to loud places and I rarely visited clubs. I enjoyed solitude and nature, and only went to bars or discos a couple of times per year. Never really took much joy in it most of the time.

At the beginning of 2021, I noticed I was having difficulty in equalizing pressure in my ears. This happened on several occasions. But one morning, it became really bad and my hearing in my left ear was almost gone. Therefore, I scheduled a doctor’s visit as soon as possible. The conclusion was that the cause might be excessive earwax, so I underwent microsuction and felt a little better at first. However, the pressure issues persisted in the future but were manageable, so I decided not to look for another opinion from a medical professional.

Later that year, I had a dental implant surgery. Afterwards, my hearing in my other ear (the right one) became muffled. The surgeon denied that the procedure was to blame and I was sent to one of the best ENTs in the country. She did a standard audiogram, which showed no abnormalities, and also examined me and said she didn’t find anything that was visible with the naked eye. But according to her, since my sinuses were lifted during the surgery, that might have played a big part in my ear problem. With time, this heavy feeling in my ear eased up and I was doing okay. However, I still got the occasional ear pressure when I was traveling by car, or right after waking up. Sometimes managing to equalize the pressure lasted for hours.

The Beginning of the End

The next thing that happened was the final nail in my coffin and led me to where I am today. I was having dizzy spells for over a month and decided to visit an otoneurologist. He was renowned, too, so I had high hopes that he would help me, or at least provide some advice on how I can mitigate the dizziness. He did a couple of tests and one of them was a caloric test, where they basically blew hot air straight into my ears for about a minute. Prior to all this, I shared with them my ongoing issues with ear pressure, but they claimed I would be fine. The reality was much different, though. Right after the test, my hearing was muffled and I developed tinnitus — a high-pitched bilateral hissing. I shared my concerns with the doctor, but he brushed me off and said the symptoms would pass.

The so-called test showed nothing strange at all, so he prescribed a herbal anxiety pill to try. This had me thinking, when you don’t have the skill set to treat someone, it’s always an anxiety issue, right? That’s a doctor’s cop-out. Not only was he no help for my dizziness, he brought me one of the worst plagues ever and basically destroyed a young man’s life. And also, the “test” was not connected to software on a computer, so the doctor basically looked with his naked eye to check for something abnormal. I was later enlightened by another professional who told me how ridiculous and ineffective it is to conduct the test that way.

At the beginning, I thought this would indeed ease up with time. But after 3 days, I developed hyperacusis. The world became much louder and bothersome. I went back to the same doctor and told him what the consequences were of the incorrectly performed test, and of course he denied having any responsibility for it. So I decided to search for a solution elsewhere.

I visited another otoneurologist whose equipment was much more up to date. He expressed frustration that his colleague performed a caloric test in the first place, saying it’s an old procedure and not quite accurate. Additionally, he noted that I had some earwax which had built up, so the other doctor should have skipped the test entirely, since having earwax was something that could interfere with the test and also pose hazards, like possible ear damage. But he was able to easily diagnose me for my dizzy spells. He said the only thing for my H and T would be trying a weak benzo plus some sleeping pills, and to give it all some time. So I listened to his advice.

However, my T was progressively getting worse, so I went to another ENT. She manually removed the earwax I had and tried a different treatment with Vinpocetine, Betahistine, and Piracetam, which only made my tinnitus worse after a week. I also tried Ginkgo Biloba which spiked my tinnitus, so the ENT decided against all this at the end and she admitted she could not help me much more. In the meantime, my hyperacusis was getting a little better for some sounds and frequencies. I was still able to go outside with earplugs and go to the office when almost everyone was still working from home back then. My tinnitus would spike, but It would return to its frequently changing baseline in the morning. I was able to meet with 2 or 3 people in the same room as long as I was wearing hearing protection, because voices bothered me a lot and earplugs managed to take the edge off sounds. However, I stopped using public transport, and also stopped going to the park and crowded places. Silverware, flushing the toilet, water hitting the faucet, dogs barking, birds chirping, the TV’s volume on moderate level, were only a part of the things that caused me discomfort back then.

First Major Setback

After 2 months since the onset, I was feeling a bit better. So I decided to visit a café in my neighborhood that I’ve been to a dozen times before. However, this time was different. Although I was wearing earplugs, the background music seemed too loud for my ears. So I left after 30 minutes. Little did I know the hearing damage was already done. My tinnitus spiked tremendously and permanently. And the next day, I was at work and noticed my sound tolerance dropped significantly. From that moment on, sounds I could tolerate before started to permanently set me back. I was still going to work somehow, but needless to say, I was barely managing with my day-to-day tasks. As time passed, my tolerance never stopped getting worse and I had to take a break from my job, hoping it would get better if I gave my ears some rest. I was not able to maintain calls for more than a couple of minutes, I was unable to speak for prolonged periods of time, and my concentration level was crucially disturbed.

Being Homebound

Danail with ear protection on.

It was around that time that I became homebound and the outside world grew into an intolerable environment for me. Life became pure torture. All insignificant sound exposures were worsening my symptoms. And shortly after, I developed noxacusis, which is basically getting physical pain from sounds. Then, I tried researching everything I could find on the internet. I spoke to hundreds of people and scheduled appointments with the world’s best doctors and audiologists. I tried strict diets, benzodiazepines, and SSRIs. I visited herbalists and homeopaths. I experimented with different treatments that people threw at me, all to no avail, though. I was getting worse no matter what, whether I stayed in silence or tried to give my ears a little sound exposure at home. So it was no surprise that I was forced to leave my job due to my disability. I left the city that I was living in, too, and had to move back in with my parents, the place where I currently live.

Living with Severe Hyperacusis and Its Consequences

Having hyperacusis at any level can be a life-changing experience. However, people need to understand that there are different severities of it, as there are with every other disease, too. Being on the severe spectrum is like being allergic to air — it is impossible to escape it. In this case, it’s sound instead of air, and nothing can help you but trying your best to avoid it. To slow down the worsening of your symptoms, you’re forced to isolate as much as possible. This robs you of almost everything that once made you human. You become socially deprived, you cannot maintain a job, you’re unable to go outside, or even listen to music. TV or any audio makes your tolerance worse and sets up the pain cycle. Projecting your own voice becomes a problem, birds singing, crickets, the sounds of waves and rain, people talking at normal volume, and even whispering — the list is endless. Everything that used to bring some positivity to your mind and soul is now a source of torture, and causes pain. There’s no escape from sound, as the world is built on it.

If you know someone who is struggling with hyperacusis, please make the necessary efforts to accommodate them the best way you can, and try to learn about how devastating this condition can be and what they’re going through. Do not undermine their struggles. Believe me, they are immense. Please do not gaslight them and make them feel unworthy. They are forced to live a life of pure torture — one that only a small amount of people in the world are ever unlucky to cross paths with.

If you have hyperacusis, please be really cautious in the beginning. Listen to what your own body is telling you, give your ears as much rest as possible, avoid loud places, and if your ears are bothered by certain sounds, do not force them to go through pain. Give them a rest and hope for the best outcome. There are no guarantees, but many people do recover completely or to a very livable degree. So don’t lose hope. Be very vigilant with advice from hyperacusis sufferers online, because what worked for one may not work for another. It’s important to listen to your body. This condition is pretty misunderstood. So if you do decide to try anything, it’s at your own risk. Please measure the pros and cons carefully beforehand, as there is no certified treatment available.

But whatever you do, I implore you to be careful, first and foremost. Hyperacusis doesn’t care who you are or what you do in life. When things get too severe, it takes your dreams, accomplishments, and everything important, and squashes them forever. My story is a testament to how it can destroy you, where even the most sacred of accomplishments are now defeated.

Hyperacusis can undermine the most sacred of accomplishments.

6 Comments

  1. Travis

    I love you brother. I am so sorry we fell into this trap. You are one of the most amazing souls I ever been able to connect with. I would choose to heal you over my own brother, sister or mother. You are my family. I wish these evil afflictions would go away so I could come meet you.

    Reply
  2. Hirdesh

    I feel every word you written… 😢I’m also also suffering from hyperacusis, Meniere’s desease, virtigo, balance disorder while moving, hearing loss, tinnitus.

    Reply
  3. maillog

    Hi, member of my family. I just wanted to say how fantastic this article is—it’s nicely written and has nearly all of the important details. I hope to see more content similar to this one.

    Reply
  4. Morten

    This is a very well written article. I can relate to 99% of it. I have been suffering for the last 4,5 years, but do believe I am slowly improving – But that is most likely related to spending 99% of my time isolated from the outside world.

    Reply
  5. Gana

    Hello, thank you for sharing. I have suffered for years from hyperacusis and tinnitus following sound trauma. I’m just looking for calm to live in order to be at peace. I also have another disabling pathology. I think we need to share our suffering. I know that if I am in a calm place I can live well with hyperacusis I have managed to accept it even if it is painful, the Alvis audio mk5 earplugs help me a lot.

    Reply
  6. Luc Brugere

    I know what you suffer, the community knows too. I live with it for 13 long years.
    You’re learning quickly, the key is : “Listen to what your own body is telling you”.
    Yes, no matter what the others think about that.

    Reply

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