Hi everyone, thank you for reading my story with Hyperacusis.

Hyperacusis has made me a broken man. You have probably experienced ringing in your ears after a night out. Well, I experience this ringing in my ears and head all the time, without any pause. And that’s not even close to the worst. I’ve gotten to the point that many everyday sounds hurt my ears unless I use protection. But before I talk about my debilitating hyperacusis, let me tell you about how this all started.

The beginning: tinnitus

Clubbing was one of Jonas’ favorite activities with his friends.

My journey with hyperacusis started when I was 21. I was young and had my share of problems, but life was good. During the ride home after a night of clubbing, I remember my friend telling me how loud it was at the club. He said he didn’t hear very well and the ringing in his ears was louder than usual. I focused on my ears
and yes, they were ringing quite loud. We started talking about something else and had fun on the way home.

The next morning, I woke up and noticed my ears were a little sensitive. Only years later did I learn that I was experiencing something called an acoustic trauma. ”I went out three night in a row, it was probably a bit too
much” I thought. “Some rest for my ears and I’ll be fine.” And indeed, by evening the sensitivity was over and I didn’t pay any attention to it anymore. I was clueless that I had permanently damaged my ears, and this was the only warning from them that I would ever get.

A week later I went out clubbing again. My brother-in-law was one of the DJ’s performing so I invited several friends to join me. We stayed until the party started winding down. But we didn’t feel like going home yet, so we went to another club until it closed. I was home not late at night, but early in the morning.

Upon waking up, I again sensed that my ears weren’t okay. At that moment, I promised myself that I would always use ear plugs when going out. Again, the sensitivity was over by evening. But it was too late. A few
days later, I took a nap after coming home from college. When I woke up, I noticed my ears were ringing. I was scared and panicking. I googled “ringing in the ears” and learned that it probably wouldn’t be going away. I even learned about something called hyperacusis, which is an over-sensitivity to sounds. I swore myself that I would not let that happen to me. I would be extremely careful from now on.

At first, I could barely sleep. My mind was constantly focused on the ringing. Surprisingly, it only took me a few weeks to habituate to the ringing. It still bothered me, but I was able to fall asleep pretty easily, especially when I was really tired. I used the fans of my PlayStation to mask my tinnitus in bed. I also bought custom made ear plugs which I used whenever I felt like needing them.

First aggravation

Hearing protection provided Jonas a false sense of security.

About 6 months later, I went out for drinks with a friend. We decided to go to a club to end our night. When I entered I immediately noticed how loud it was. My clothes were vibrating from the noise! I thought I’d be alright with my plugs, but my friend noticed I wasn’t really at ease, and he suggested calling it a night. I was relieved he suggested it himself, so I wasn’t ruining his evening.

About a day or two later I noticed the ringing in my ears was louder, but I also developed new tones. There was especially one tone in my right ear which was a high-pitched screech. I had difficulties sleeping because
of that tone.

Masking the ringing was more difficult, because I also developed something called reactive tinnitus. This means that your tinnitus reacts to certain sounds in your environment. For me, mechanical sounds, like
the fans of my PC or the noise of a freezer spike this. It made habituating to my new tinnitus much more difficult than the first time. After some weeks I noticed I could control the reactive tinnitus with the position of my neck. Being able to somewhat control my reactive tinnitus made habituating easier. I used the background noise of my TV to fall asleep, which did not trigger my reactive tinnitus.

Around the same time, I also had some slight fullness in my ears. Little did I realize at the time that this was the start of my hyperacusis nightmare. Back then it wasn’t very bothersome. I stopped going to clubs, but I still went out with friends and wore my plugs whenever I thought it was necessary.

Things went well for years. I even started clubbing again after getting my driver’s license. If I was in a place which was too loud, I would simply go home. Things went well. I graduated, got a job and went on with my life.

Hello hyperacusis

A few years later, I decided to gather some friends to go clubbing. Some weren’t feeling like going out so I had some convincing to do. I offered to drive so they could drink. Immediately upon entering the venue, I realized that the noise was very loud, especially the bass. I couldn’t just leave because I was the designated driver and gathered/convinced everyone to go out. I talked to the DJ to see if he could put down the volume a bit, and to my surprise he did! I noticed the decrease in volume and felt much more at ease. I even went outside for a walk a few times to give my ears some rest. But the damage had been done. I had suffered a new noise trauma.

When waking up the next morning, the first thing I did was listen to my tinnitus. It didn’t seem to be any louder, what a relief! When I got up, the dishwasher was on. The sound of it didn’t cause me any pain, but it
made me uncomfortable. I convinced myself that I was panicking because the noise of the previous night was pretty loud. Besides, the ringing in my ears was not worse. However, during the day I noticed my left ear started feeling full. Before going to sleep I focused on my ears again and this time, the tinnitus seemed louder. Or did I imagine it?

I had a week off from work, so I was not exposed to very loud sounds during that time. The fullness got much better, but the increased ringing in my ears remained the same. I spent some time that week reading about
tinnitus, fullness, hyperacusis and noise traumas. Most advice I read agreed that protecting my ears to normal, everyday sounds would make it worse.

A few weeks later, during a particularly busy day at work there was lots of noise. At first, I didn’t want to put in my plugs all day as I feared that would only make my ears worse, but after a few hours I decided to put them in anyway. When I got home my left ear was really warm and full. The next day I noticed my tolerance for sounds had decreased and my reactive tinnitus was back with a vengeance. My left ear also started to twitch when people spoke loudly near me. Not overprotecting made me worse, it was the complete opposite of what I had learned. It was unlikely that I got actual hearing damage since I had worked at this job for years with tinnitus (and it could often be noisy and busy) without any issues. Since then, I stopped caring about overprotecting my ears and was very, very careful. If there was a single shred of doubt there would be loud noise, I’d put in my plugs.

I went to an ENT who decided to test my ears. It turned out my hearing was slightly above average for my age and my hyperacusis threshold was about 80 decibels. This sounds like a luxury to me today, but back then I was pretty bummed out by it. When my ENT told me that there were no treatments for this, I was devastated. I was given the advice that relatively loud sounds, like a truck passing by or dishes clanking, were actually good so my brain could “get used” to it again, even if it caused my ears to feel full. But I knew better from my prior experience. I’m sure that he meant well and that exposing oneself to louder, but not harmful, sounds helps some patients, but not me. It made me worse.

My life had changed quite a bit because of my hyperacusis, especially when it came to work. Like I said, it could be loud at work so I was on constant alert. I also wore plugs to commute from and to work. My social life also suffered because I couldn’t go to clubs or the movie theatre anymore. I avoided busy places in general if possible. I didn’t usually wear plugs when driving or shopping, but there could always be random events that made my ears feel full. I started worrying about things like lawnmowers and motorcycles because they are so loud.

Luckily, after about four months my tolerance started to increase and the twitching went away. I noticed I didn’t use my ear plugs as often. For example, I didn’t need them when cooking or doing the dishes anymore. I was even under the impression that my tinnitus had improved. But my hyperacusis never fully went away, so I remained vigilant.

Then, a firecracker exploded just outside my work. The bang was so loud some people thought it was a bomb explosion at first. Both my ears felt incredibly full, I had to wear plugs to get through the day. The fullness
in my ears, especially in my left ear, lasted quite a while. Even when the fullness started going away, I noticed that my tolerance to sounds had decreased. On top of that, my tinnitus was louder again. I felt like starting
all over again.

Not much later the coronavirus pandemic started and I was forced to work from home, which actually was a blessing for my ears. During the lockdowns I barely needed to use my plugs. But then, everything changed…

Goodbye life as I knew it

During a sunny summer day, I was relaxing in my garden when a plane (perhaps a jet) flew over. It was sudden and unexpected and I was half asleep when it happened. For some reason I did not have the proper reflex to
put my fingers in my ears. Maybe after a year of working at home, not worrying about noises anymore made my body less on alert. Maybe my brain was still in sleep mode. It doesn’t matter now, it happened.

At first, it seemed alright. My left ear was feeling full but that was nothing unusual. When I started filling up the dishwasher a bit later, the sounds of dishes clanking were insufferable. When I put on the TV, the volume that was perfectly fine earlier in the day hurt. I knew then that I was suffering from a new acoustic trauma. Even something usual like flushing the toilet hurt. It all caused a burning sensation, mainly in my right ear.

Perhaps 20 seconds of noise exposure has completely changed my life. The mild hyperacusis, which was hard for me at the time, now looks like heaven. I could still do things, I could still see friends. If things were loud, I would use ear plugs and be fine. Now I can’t do those things anymore. I am completely home bound. On bad days, even my own voice hurts.

Before, the fullness in my ears could last a few hours. Now the pain can last days, depending on how loud the noise I am exposed to is. Doctors give me the advice to keep exposing my ears to sounds that cannot cause
actual damage (like voices), but this only makes the pain worse and decreases my tolerance.

Very slowly, I’ve gotten a bit better by resting my ears. I can listen to music again, on a low volume. But most things still hurt and loud noises can set me back weeks. Needing almost complete silence and barely being
able to talk because your voice hurts is incredibly hard to deal with. At the moment when I need support the most, it only causes more pain. But only silence and rest help.

If I’m having a bad setback, sometimes ear plugs aren’t good enough and I need double protection (ear plugs and ear muffs). I have done several things in the house to limit noises inside, like soundproofing my room. Perhaps I will write more on that some other time.

Another mentally challenging aspect of this condition is the constant fear of it getting worse. As you know from reading this, I’ve experienced several moments in life that caused damage to my hearing. What if
this happens again? Will my tolerance and pain become even worse? I try not to think about this too much.

I’m incredibly lucky to have supportive family and friends. My family helps with things like chores in the house and shopping, and I can still meet up with friends online. But it is hard to make plans because, when I have a setback, I can’t tolerate much and have to cancel everything.

We need help

If you are reading this because someone you know has hyperacusis, please realize that this condition is very real and changes lives. It is a very rare disorder so most doctors, even ENTs, know very little about it. I’ve had people tell me that I have anxiety, that my pain is imagined and that confronting my fear of noise will help. Again, they mean well, and I know they want to help me, but I assure you that my condition is not anxiety. As
someone who loved loud clubs, I have no idea how I would suddenly become afraid of loud sounds.

When you live with someone with hyperacusis, be aware that innocent sounds for you can cause severe pain. Hyperacusis Central has an excellent video with tips for living with a hyperacusis patient:
https://www.youtube.com/watch?v=Dle_FHHyG5g.

Noise is dangerous, just as cigarettes, sugar and UV light are. One soda won’t give you diabetes, nor will one cigarette cause cancer. But at a certain amount, they cause damage to our body, just like noise does. People are aware of the dangers of the former, but not of that of noise. This needs to change.

Research is still in its infancy and advancing slowly. In the past years however, researchers have discovered that there are multiple types of hyperacusis. I am suffering from the subtype called pain hyperacusis
or “noxacusis”, although I have not been diagnosed with this subtype. We need much more money to understand what causes hyperacusis and how we can treat it, and perhaps even one day cure this.

Spread the word about hyperacusis to your friends and family and, if you are able to, please donate to the Hyperacusis Research foundation: https://hyperacusisresearch.org/