HYPERACUSIS CENTRAL

Jonatan’s Hyperacusis Story

by | Jun 17, 2023 | Patient Stories | 7 comments

Hello guys! I’m going to tell you my story. It’s not easy… because in a text it’s very difficult to express with words what one feels or suffers.  

I’ll start by telling you that since I was a child, around 11 or 12 years old, I have dedicated myself to music. I was a music producer until the age of 38. 

I started in the ’90s, when technology became more accessible on a limited budget, allowing aspiring artists to compose musical works on their home computer. From that point, I spent 25 or 26 years with music practically every day, for many hours at high volume. When I entered my 30’s, I started lowering the volumes to take care of my hearing and avoid future hearing problems. 

In my family, they always told me that I would become deaf listening to music at such high volume. I thought that as long as I went to the doctor, got my hearing tests done and they turned out fine, and as long as I didn’t turn the volume up ridiculously high, I wouldn’t have many problems. Prior to 2015, I never had any hearing issues. 

Around the end of 2015, while working in the studio, I started experiencing discomfort and pain in my right ear, in particular. I attributed it to long music producing sessions and decided to take breaks to rest my ears. I hoped this would address the auditory fatigue I was experiencing. It became increasingly difficult for me to recover from fatigue, and I could never fully recover; maybe I would go a week without music and manage to relax my ears a little, but they would quickly become fatigued and painful again. It was constant and long-lasting pain with spans from days to weeks. 

Jonatan making music

I started going to the doctor, and as we all know, it’s very difficult to get an appointment with an ENT specialist who can detect this kind of problem. Moreover, I didn’t know about hyperacusis back then, so at the time I deferred to the doctor. I followed their advice, which wasn’t much, just to lower the volume of the music and go home. 

Things didn’t improve. Music, apart from being my vocation, was also my job, and I couldn’t do much. I tried covering my right ear, which was the most affected one, and playing music at a very low volume, but then my left ear started to suffer as well. I experienced fatigue and fluttering of the eardrum. In the end, I decided I had to stop, at least for a while until I recovered. 

This was around 2016, April or so… I kept going to the doctor, and they performed a CT scan and some other tests. They told me they couldn’t do anything for me anymore, that everything was fine. They diagnosed me with the wildcard of anxiety and sent me home. 

I started searching for information on the internet to see if I could find similar cases to mine. At the time, there wasn’t much information, but there were a few cases. I started on websites like Tinnitus Talk and some from my own country (Spain), talking to people who had similar problems. That’s when I started hearing the word hyperacusis, although it didn’t fully match my condition. Most people didn’t experience ear pain; it was more about sensitivity to volume, and I never had hyperacusis related to volume.  

To avoid making the text too long, I will omit certain steps because it would be very lengthy and dense to explain the eight years I’ve been through. So, let me start by saying that I tried many things: sound therapy, mandibular splint, acupuncture, and so on.  

I became catatonic; I didn’t know what was happening to me. Everything was conjecture and speculation. It was a very dark period. My world collapsed, and I had to move back in with my parents for a year and a half. 

I was dizzy all day long. I stayed that way for a year and a half, along with the ear pain and auditory sensitivity. My case of hyperacusis is not common. It was challenging to find people who experienced something similar to mine. I have delayed pain, so obviously, if there’s a loud sound, it hurts immediately, but sometimes, low or moderate sounds that you think won’t affect you later take a toll. 

I discovered that there were other people with delayed pain like mine. We are very few; it’s not the most common thing, but nothing about this condition is common. 

By the end of 2017, I started to improve and decided to work in jobs with less noise. I continued that way until 2020, and things were going fairly well. Finally, I believed I could lead a normal life away from the loud noise of the studio and clubs. But by the end of 2020, while working in an office with certain noise, I experienced a more severe case of hyperacusis. From 2017 to 2020, it was mild to moderate and manageable. But by the end of 2020, it became severe. At that moment, I didn’t leave the office because I couldn’t stop working. I’m poor and I needed the money. I stayed that way for a year until everything fell apart. The pain was intense, and I couldn’t sleep. Everything kept getting worse until I had to stop. 

In 2021, my son Jordan was born. The most beautiful thing in the world: having a child. I won’t extensively explain the fact of having a child with hyperacusis because that also had it’s mental process. In fact, I didn’t want to have children because of my problem. How could I have children if I have hyperacusis? A thousand things crossed my mind. In the end, due to life circumstances, my son was born with an ex-girlfriend of mine. We weren’t a couple anymore, but I couldn’t raise children, and I decided to help her. She already knew my limitations and knew she would have to take care of the child, especially when he is younger, due to the noise and other factors. 

Since 2020 I haven’t been working and have been going through medical processes to try and receive some pension in my country. I must say that everything has been denied. I’ve tried with lawyers and others, but I can’t claim anything for this condition. So, for the past two years, I’ve been studying programming from home to qualify for remote work. However, I don’t even know if it will go well because video calls will be a big problem. I can’t talk much because my own voice hurts. 

Right now, I’m in limbo, not to mention the times the thought of jumping out the window has crossed my mind. But panic takes over, and I don’t do it. Currently, I’m in the phase of trying to accept that I’ve had to live with this for eight years. Additionally, I have to deal with other illnesses I have, such as dysphagia due to gastroesophageal reflux, which also causes many problems. 

Jonatan today

I live with my parents, and I spend almost the entire day in my room studying programming. I see my son three times a week, but I can only stay with him for a short while because he cries and is young. 

Mentally, this destroys you. But as I mentioned, I’m in the phase of accepting that this is my life. I don’t even remember the life I had before, and it’s not going to come back. So, I try to be silent and avoid too much pain. Who knows what will happen in the future? I don’t want to think about it.  

Maybe it’s better not to grow old… I don’t know. I will continue fighting or trying to change things in my life to see if hyperacusis improves or if a cure is found (although I’m not optimistic in the short or medium term).  In the meantime, I will try to change something within myself to help me lead a better life, because now at 45 years old, it’s not a good life. I’m not the only one going through things; everyone has their problems. But pain hyperacusis isn’t recognized by the medical establishment! I, like many others, give it a name and a face. For those who have health and are well… enjoy it! You never know when it will be taken away. 

Greetings to everyone!  

7 Comments

  1. Kathy

    Hi Jonatin, So very sorry this happened to you. I have my own issues with severe loudness H and T. I do get discomfort. Immediately after my sound injury due to an enclosed MRI I did have burning pain for almost a year…most of the time, not only with sound. That did subside. The H and T has not. I live a reclusive life, so I totally relate. I must wear foam ear plugs when I must go out. 11 years now for me. Yes.. the isolation is brutal! You are doing the best you can do! I know that is not enough ….not nearly, but do try to give yourself credit for coping and living day to day with this. You are not alone, nor abandoned although it FEELS like it. Pleased take care and do not give up!

    Reply
  2. Jonatan

    Thank you very much Kathy for your words of support. I hope you get better too.
    Let’s see if together we can give visibility to this that seems to not exist, especially for the ENT, who are the ones who should help us.
    A big hug.

    Reply
  3. Brody Olafson

    Hello Jonatan. I really connect with your story. I’m 21 and also have delayed and lingering pain hyperacusis, which was caused by my computer speakers being too loud over the years. Right now I’m homebound, also living with my parents.

    I hope you start seeing some improvements soon! And hopefully, some treatments will be available in the near future.

    Reply
    • Saurabh

      Hi Jonatan, I am sorry you are dealing with so much pain. In 2020 you became severe due to which setbacks? Have you seen any improvement in laat 3 years?

      Reply
      • Jonatan

        Hello Saurabh, it was when I started in an office… I had to answer many phone calls, in other jobs I hardly made any calls… I didn’t have to interact so much with people, they were other types of jobs. ..

        But in the office I received many calls, and although I used the phone to a minimum and with special headphones with a minijack (they exist), after a month of being there I noticed the worsening, a lot of ear pain that did not go away… In addition to receiving calls, I had to talk a lot and my voice, if I talk a lot, weighs my ears… In the office there was also a lot of noise… Smartphones at a very high volume and people shouting, I was in an Amazon office and from time to time From time to time there were parties and things for the workers with a lot of sound, speakers… etc etc… a month later I saw that it had gotten worse, I tried to alleviate it without success… It lasted 1 year, but I must have left sooner.

        Since then I have not improved, only if I spend a long time without speaking and almost without noise… then the pain improves a little… but at least the pain starts, for example today is a horrible day, sometimes I try to do an Extra like going somewhere… but I pay the consequences.

        A hug.

        Reply
    • jonatan

      Ohh Brody, thank you very much for your words… I hope we get an improvement no matter what.
      A big hug and thanks for writing!

      Reply
      • Shari Penate

        I’m not sure what kind of T I have. Mine started in 4/2014. It is very loud from day one. It has never changed. It is painful at times. I finally got to the point, in order to sleep, I take a sleeping pill, hearing aids with brown noise a white noise sound machine and tv just to sleep. I am so sorry for what you all have had to deal with this. I hope and pray one day… a cure of some kind. Blessed to you all. ❌⭕️’s

        Reply

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