HYPERACUSIS CENTRAL

Casper’s Hyperacusis Story

by | Mar 12, 2024 | Patient Stories | 8 comments

Greetings from Sweden! My name is Casper, and I am 22 years old. Today I wanted to share my journey with tinnitus and hyperacusis, with a special emphasis on noxacusis – a type of hyperacusis that is still largely unknown in the medical community. 

Casper a few months before he got noxacusis.

Tinnitus, and especially hyperacusis, has completely ruined my life and deprived me of any quality of life. Basically, most of the things that make life worth living are no longer possible. Tinnitus is a persistent ringing sound that only the sufferer can hear, while hyperacusis is a hypersensitivity to everyday sounds that do not normally bother people. There are different types of hyperacusis, one of which is loudness hyperacusis, whereby sounds are perceived to be amplified and sound louder than they actually are. Another type is pain hyperacusis, also known as noxacusis (in my story I will use the term noxacusis), whereby sounds cause physical pain in the ears, such as stabbing or burning pain. 

Mild tinnitus and hyperacusis 

My journey with tinnitus and hyperacusis started in 2018 when I was only 17 years old. I woke up one day with ringing in my ears. The day before, I had been listening to loud music for several hours and I immediately realized that this was probably the cause of my tinnitus. To be on the safe side, I sought medical attention for my tinnitus and was quickly seen by a doctor. The doctor diagnosed me with an ear infection, which surprised me, and I was treated for it. I got my hopes up that the ear infection could be a contributing factor to my tinnitus and that after it was treated, my tinnitus would go away – but this was not the case. My tinnitus has persisted, and I have not experienced silence for over five years now. 

Listening to loud music through headphones was a contributing factor to Casper’s tinnitus and hyperacusis.

During this time, I was still at school, and I remember how the sounds in the school cafeteria started to bother me and were louder than before – for example, plates and cutlery rattling. It was then that I realized that I had become hypersensitive to sound with the onset of my tinnitus, and I soon became familiar with the term hyperacusis. 

How could I already be suffering from these conditions at the age of 17? I am convinced that it was not just a day of listening to loud music that caused it. If there is one thing I have wondered about, it is how I got these problems. I note that I have been to a few concerts where I did not wear hearing protection. I also played some computer games during this time, but I don’t think I was ever exposed to any harmful levels of noise while doing so. However, I can’t rule it out as a contributing factor. I sometimes listened to loud music just like many other people do without getting these problems. At worst, they get tinnitus and hearing loss, but hyperacusis is rare, and getting noxacusis is even more rare, which I will talk more about later in this story. The conclusion I have come to is that something must have made me more susceptible to damage from sound. My ears simply couldn’t cope with the amount of sound that the vast majority of other people can handle without any problems. Some people can abuse their ears with loud music for several hours a day all their lives without experiencing these problems. Something is causing some of us to have ears that are much more vulnerable than others, and there may be several underlying reasons for this. 

After about six months of having tinnitus and hyperacusis, I had learned to accept it and most days I was not significantly affected by it, although some days were worse than others. I was sensitive to some sounds, but it was at a mild level, so I could deal with it. I was able to live an almost completely normal life where I only needed hearing protection in loud environments where everyone should wear hearing protection. But I was rarely in such environments. 

Years passed and I did not experience any worsening of my tinnitus or hyperacusis. For the majority of 2022, I was happy, and I didn’t think much about my tinnitus and hyperacusis. I graduated from my education, got a job I was happy with and was about to move in with my partner. I had everything you could ask for and was looking forward to what my future would look like. I was looking forward to starting my adult life and had dreams just like everyone else. 

Acoustic shock – the beginning of hell 

After four years of tinnitus and hyperacusis, my life would be turned upside down. A child made a piercing scream near me, and I got an acoustic shock. Immediately afterwards, I felt a strong vibration in both my ears. I most likely got what is called tonic tensor tympani syndrome (TTTS). This means that the tensor tympani muscle (a muscle in the middle ear) goes into a hyperactive state. This muscle is thought to protect us from loud noises. The muscle began to constantly contract, creating very noticeable sounds and what felt like vibrations in the ear. I noticed quite soon after this that my hyperacusis was not mild anymore. When I went to turn off a light the same day and the sound of the button almost sounded like a gunshot, I realized it was really bad. All sounds I heard were highly amplified – especially high-frequency sounds. The first two weeks after this, my TTTS was brutal. Sometimes it was like an earthquake in my ears, and it constantly woke me up at night. This muscle had started to contract constantly even in silence, and I also had a strong feeling of fullness in my ears.  

Children’s cries can reach 120 decibels.

I took it pretty easy in the beginning after this trauma and my hyperacusis got a little better over time. Unfortunately, shortly afterwards I was scheduled to have my ears irrigated due to a wax plug. I told the nurse who was going to do the ear irrigation about my tinnitus and sensitivity to sound, but she didn’t mention any risks of ear irrigation. Before this ear irrigation, I would say that my tinnitus was unchanged. After performing the ear irrigation with great discomfort, my tinnitus greatly increased in volume. It then went down, but not to the volume I had before, and I now had many more different tones that I heard. My tinnitus had now also become reactive and increased when I was exposed to normal everyday sounds. At this point I thought I had reached the bottom of despair, but if there is one thing I have learned it is that there are no limits to how bad tinnitus and hyperacusis can be.  

Physical pain from sound 

The general advice given for hyperacusis is to keep exposing yourself to everyday sounds and to avoid using hearing protection if no one else around you does. This is the advice given by most doctors and it is also the information you can find online for the most part. I thought this was the right way to go so I tried to live normally and didn’t use hearing protection. For example, I continued to drive, go shopping, and eat in restaurants without hearing protection, even though these activities caused me great discomfort. I thought I was doing the right thing to improve my sound sensitivity. The hyperacusis I have described so far is what is called loudness hyperacusis, where sounds sound louder than they really are. However, I would get noxacusis, where sounds cause me physical pain. 

After trying to live a normal life without hearing protection, some sounds started to cause me physical pain. Sounds from cabinet doors slamming shut and the sound of things being dropped on the ground caused me pain. This pain could last for a day or so and then subside. I would estimate that sounds higher than about 85-90 decibels caused me pain. I could still drive, cook, and go shopping without pain at this time. 

Farewell to life 

At the start of 2023, I was going on a ski trip, and I analyzed what sounds I might be exposed to. I anticipated a certain level of discomfort and perhaps having to push through some pain. What I didn’t know at the time was that this trip would have disastrous consequences for me. Not long after returning from the trip, I woke up one day and put a plate down on the kitchen counter. I noticed how this sound gave me a stabbing pain in my ear. I couldn’t believe it – my noxacusis had gone from mild to moderate overnight. I immediately made a connection with the ski trip. Other than that, I had just been at home taking it easy. Was it the wind noise, was it the noise from the long car ride, or was it the cumulative sound exposure that caused my noxacusis to get worse?  

Casper on the ski trip.

It’s easy to say with hindsight, but even though my noxacusis had greatly worsened, I still tried to live normally. I still lived by the advice given by doctors that everyday sounds cannot be harmful. I started to notice how a relatively low volume on the TV gave me pain, I noticed that the sound of cooking gave me pain, I noticed how a walk in a quiet environment gave me pain. Despite this, I continued to force myself through the pain. Surely these sounds can’t be dangerous? It will pass soon, I thought. I asked myself whether I could really trust the advice given by doctors and found all over the internet. The answer, as I now know, is that you can’t when you suffer from noxacusis. It is an extremely rare condition that most doctors have never dealt with – not even ENTs. Probably one of the few conditions where doctors can give life-threatening advice and do more harm than good to the patient.  

Somewhere at this point, I start to realize that this is not sustainable for me. I cannot continue to torture myself. But I still hadn’t fully realized the seriousness of exposing myself to sounds that caused me pain and I continued to try to live normally to make my partner happy. I didn’t want to just sit at home in silence all day and not do things with her. I continued to live like this for a while and eventually tried to cope with earplugs to do certain things, but even that didn’t help – the damage was already done. I had continued to expose myself to everyday sounds and was getting worse and worse. My noxacusis had gone from moderate to severe.  

The final nail in the coffin 

One day my partner accidentally slammed cutlery against a plate and this created an extremely loud noise. I don’t mean that cutlery was dropped on a plate, but really slammed hard with force against a plate. This was the final nail in the coffin for me. After this bang, I went from being pain-free in silence to constantly suffering from chronic ear pain. Before this, I could use sound rest to get rid of the pain. The pain I felt with certain sounds was downright brutal after this. Hearing protection didn’t help me against many of the everyday sounds and I was getting worse. The situation became so severe that the sound of my own breathing hurt, and I couldn’t eat without the sound causing pain. It felt like I had acid in my ears and like someone was dragging razor wire in them, even in total silence. Showering made me nauseous from the pain even though I used earplugs. Almost any sound caused me pain. My sound tolerance dropped to an extremely low level. 

In severe cases of noxacusis, it is one of the worst non-fatal conditions in the world. It is very rare and some people describe it as being living dead, which is not a strange description when you think about it. Having severe noxacusis could be described as being allergic to sound, and sound is everywhere – it’s unavoidable. So you could say it’s like being allergic to life. Pain can manifest itself in several different ways for people with noxacusis. I have personally experienced several types of pain: stabbing, burning and cramping pain, for example. The pain can be delayed which makes it extremely difficult to know if you are exposing yourself to sounds that are safe. The worst part for me, however, is the immediate stabbing pain in the ear, which I can experience from everyday sounds that a person with healthy ears would barely react to. Often the pain can radiate down my throat and even give me a burning pain in my face. Sometimes it can also feel almost like an electric shock going through my head and neck. But as if that is not enough, the pain does not go away immediately, but can last for hours, days, weeks, months or, in the worst case, cause a permanent worsening.  

This is what makes noxacusis so terribly brutal. It takes so little to cause so much damage. I don’t think there can be many other conditions on Earth that can worsen as easily as severe noxacusis can. You can’t take painkillers and force yourself through the pain, because doing so would only make the condition worse and cause permanent worsening.

Casper with hearing protection.

Is the advice I followed dangerous? 

At this point, I began to strongly question the general advice given for hyperacusis. I started doing more research and became familiar with the terms pain hyperacusis and noxacusis and read stories of others living with this condition. I quickly realized that the general advice for noxacusis is to stay in silence and not to expose yourself to sounds that cause pain. Just the opposite of the advice given by doctors, and which you can find everywhere online when you just search for hyperacusis. Many people get better by staying in silence for a long time, although this is not a guarantee.  

After this, I started to be extremely careful around sound. My life became all about minimizing the pain. After a while, I noticed how my sound tolerance improved and less sound caused me pain. Unfortunately, it only takes a reasonably loud sound to undo the progress you make – a sound that a person with healthy ears wouldn’t react much to. My right ear improved significantly when I started isolating myself, although it was still very bad, but unfortunately my left ear didn’t seem to have the same ability to heal, and it takes very little for the ear to get worse again after improving slightly. This was also the first time that my feeling of fullness in my ears started to completely disappear after my acoustic shock. During this period, I held on to the hope that my ears would gradually improve. I tried to seek some kind of comfort and distraction in my partner and the company of the two cats in our household. It became natural to look for distractions as a way to temporarily escape reality, whether it was petting a cat, watching TV or trying to enjoy a meal. But I still couldn’t understand what my life had turned into. 

Siri and Saga.

A nightmare without end 

In the summer of 2023, my partner decided to leave me because of my noxacusis after being away for two months. She had lived a normal life for two months and could no longer see a meaningful life with me. While she could escape from this reality, I was trapped. I had no choice but to try to come to terms with my fate. At this point it became very black and white how this condition consumes my life and takes everything away from me. It is like an endless nightmare – a merciless ordeal from which I cannot wake myself up. 

In a note written by Jason DiEmilio – a man whose condition was even more serious than mine – before he tragically succumbed to the challenges of his noxacusis, he expressed, among other things: “What happened to me doesn’t happen to people. The irony and the cruel joke of it all is completely unbelievable. I am tired of being trapped and imprisoned in my body.” This sentiment accurately summarizes the experience of severe noxacusis.  

However, the situation I found myself in would have serious consequences for my condition. I realized that I needed to secure a quiet living environment and strive to stay in my current accommodation for as long as possible. Otherwise, it would mean that I would have to move to temporary accommodation that was potentially riskier for my ears. But something unexpected happened and due to circumstances beyond my control where a person did not take my serious condition into account, I had to leave my home — the situation went out of my control. 

I had to move to temporary accommodation, which turned out to be riskier. This led to a new problem for me after I was exposed to sounds that were harmful to me and new symptoms developed. A very unpleasant progression followed, starting with a burning pain in my ears. But this time the pain spread in an unpleasant way. I started to feel the burning in my face and shortly afterwards the burning pain spread to my arms, hands, legs, and feet. It wasn’t long before I felt burning pain all over my body – the whole nervous system had been affected. After this, I noticed that I got burning pain from touch. If I scratched somewhere on my skin, it left a burning pain. Lying on my back in bed triggered a thorough burning pain all over my back. 

Noxacusis can be a very painful condition.

It has now been over a year since my noxacusis took over my life completely. Noxacusis along with reactive tinnitus is a terribly debilitating combination where life turns into survival and dreams shatter. My noxacusis is not part of my life – it is my life. Every day is a struggle with this dehumanizing condition, and unless a cure or effective treatment emerges, it seems I will have to endure it for as long as I breathe.  

As I write this, the pain that I had all over my body has improved and my ears can handle some more everyday sounds with great care. I am mostly pain free in silence or have mild pain. However, this improvement comes after a long period of silence, and it takes very little for me to fall back again. My situation is still very bad, and some everyday sounds can cause me deep stabbing pain through double hearing protection. 

The lack of understanding and empathy for the condition 

During my time with noxacusis, I have read countless stories from other people living with this condition. It is clear that in many cases there is a huge lack of understanding and empathy for the condition. People really have a hard time understanding how this condition affects your life and I am talking about both the physical pain and the mental pain that everyone with this condition goes through every day. I have read horror stories of how doctors have outright dismissed people with noxacusis, attributing the condition to mere anxiety and denying the possibility of experiencing pain from everyday sounds. The lack of knowledge among healthcare professionals is huge. Chances are that if you seek treatment, the doctor has never met a patient with similar symptoms before. Instead of acknowledging their lack of knowledge about the condition, the doctor may, for example, attribute everything to anxiety. Some doctors believe the patient’s story but give out advice that can be life-threatening. I was told that “the sounds themselves are not dangerous,” despite my explicit description of how the “sounds” gradually worsened my condition. I was basically told that the sounds that had caused my catastrophic worsening were not dangerous. The level of knowledge some doctors have about this rare condition is frightening. However, this is not an accusation against the doctors themselves – it basically underlines the education they receive. The condition is so rare that it is not part of a doctor’s education and some doctors have not even heard of hyperacusis. 

Many doctors are not familiar with noxacusis.

Many people with severe hyperacusis experience a profound lack of understanding and empathy from those around them, whether family, friends, or partners. Despite trying to put their situation into words, many feel that they are never understood. I think this is true of invisible disabilities in general, but it’s certainly something I’ve noticed when reading the stories of others. For many who suffer from severe hyperacusis, the lack of support exacerbates the cruelty of the condition.  

Personally, I am fortunate to have supportive family and friends – a privilege that not everyone has. However, I have encountered challenges in gaining full understanding of my struggle with this condition and its consequences. For example, comments from my former partner, who witnessed my fall up close, could be: “You’re not trying to do anything to get better” or “You have no drive” – perceptions common to many people facing similar circumstances. Despite sincere attempts to find solutions through the experiences of others and scientific literature, many of us with severe hyperacusis encounter such uncomprehending comments. Despite thorough explanations of how the condition works and how it affects me, my experiences remained incomprehensible, leading to a sense of resignation. For example, during a situation of mental and physical exhaustion when I simply needed understanding, she suggested that her friend, who was looking for accommodation, move in with us for a while, even though I repeatedly explained that this was impossible due to the severity of my condition. The necessary understanding seemed to be missing. 

This lack of understanding highlights a significant challenge associated with this condition. Sadly, one of the most distressing aspects of this condition for me – in addition to the general physical and mental pain that the condition causes – is the mental pain of sacrificing my ears, and thus the life I had left, for a person who did not care, respect, or empathize with my condition when I no longer had anything to offer. This struggle, shared by several others with hyperacusis, demonstrates the need for increased awareness and support for individuals who must navigate the complexity of this condition. 

I believe it is crucial for both health professionals and the public to be able to distinguish between loudness hyperacusis and noxacusis, and to understand that there are different degrees of severity within hyperacusis. I have experienced mild hyperacusis, and it is difficult to even compare it to severe hyperacusis, and especially severe noxacusis. Moreover, it is important to emphasize that each case is unique and that something that helps one patient may be another patient’s downfall. This makes hyperacusis a very difficult condition to manage and healthcare professionals must take great care when dealing with hyperacusis patients. At the same time, people with hyperacusis should be careful when giving advice to each other and be aware that what works for one person may not work for another. 

We need help 

Those of us suffering from severe hyperacusis are just shadows of the people we were before this condition took over our lives. I am only 22 years old and never got the chance to start my life before this condition took it away from me. The thought of suffering like this for possibly over 60 more years is terribly frightening – I’m not sure I can handle it. There is a great need to raise money for research and also to attract new researchers to start researching hyperacusis. I encourage anyone who would like to help to consider donating money to Hyperacusis Research, a non-profit charity dedicated to the development of effective treatments for hyperacusis and to funding research which will eliminate the underlying mechanisms that cause hyperacusis. 

Finally, I would urge everyone with intact hearing to care for and protect it. Protecting your ears can be crucial to avoid conditions such as tinnitus and hyperacusis. Be aware of noise levels and use hearing protection when warranted. If you are going to a concert, nightclub, or any place where there are harmful levels of noise – protect your ears! Your future well-being may depend on it. Let my story serve as an example of the potential dangers of noise. For those who are already living with tinnitus and hyperacusis – make the necessary life changes to avoid making your condition worse. 

Thank you for taking the time to read my story. 

For individuals enduring severe noxacusis, existence morphs into confinement where sounds become akin to the bars of a prison, confining the sufferer within.

8 Comments

  1. Travis Scott Henry

    Wow… all your words and trials and tribulations with these afflictions hit hard. I experienced everything you have pretty much. Except my families lack of willingness to open their mind and read the articles and take my diagnosis seriously has greatly worsened me. They have pushed me to take the benzos doctors prescribed and tricked me into the mental ward when I first became homebound..not believing me at all. Thinking I was making my symptoms worse by staying home and hiding from sound…begging for help finding a quiet spot to battle. I am now in a gravely state because I didn’t run away from all people from the start and research the internet deeply and find all the horror stories. Doctors gave me all the same advice you got. Friends and my woman of 5 years pushed me to keep exposing with reactive tinnitus.. only for her to leave me and them to discard me once I became damaged beyond repair. If you ever need a support group or to vent contact me on Facebook . Much love to you brother. I hope somehow we can make it to better days. My sound tolerance is completely gone and tinnitus at a insane level.

    Reply
    • Casper

      ❤️

      Reply
  2. Nathan Repke

    I empathize with the words you have written so much. Albeit acquiring noxacusis from different noise traumas, the similarities to the lack of empathy and acknowledgment/validation from Dr’s and family, and being left by a loved one really hit home for me when reading your story. Thank you for sharing ❤️

    Reply
    • Casper

      ❤️

      Reply
  3. Karine

    Merci beaucoup pour ton témoignage. On voit toute la souffrance physique et psychologique de cette pathologie. Je suis aussi hyper acousique depuis juin 2022.,Suite à un trauma sonore , en ce qui me concerne, j’entends beaucoup trop fort et pour le cerveau c’est extrêmement fatiguant, , ,on survit dans un milieu hostile ,avoir tant d’envie et regarder la vie en spectateur est douloureux …. il faut que les gens sachent à quel point ce handicap invisible fait souffrir, et que l’on a besoin que la recherche avance .. il faut absolument des fonds pour les chercheurs .. on espère grandement renaître un jour à la vie .. accrochons nous , coûte que coûte …
    Courage à tous 🙏

    Reply
    • Casper

      ❤️

      Reply
  4. Tulipe

    Hi Casper,

    I’m 30 yo, and I have T since 2 years.

    I’m feeling so bad when I see younger people than me going into hearing disorders.

    This is the worst conditions ever. I would rather be deaf than having to deal with this.

    I’m trying to protect myself everywhere, but it’s really difficult to live like this everyday, with the fear of worsening our condition.

    Life is not the same anymore.

    Reply
    • Casper

      ❤️

      Reply

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