Am I the Unluckiest Person on Earth When It Comes to Tinnitus? My 6-Year Tinnitus Nightmare: How One Festival Changed My Life

[Kam75]

Hi all, I have been a regular on Tinnitus Talk since 2019, but I feel the need to share my tinnitus history as my emotional state is currently at its lowest.

I will try to be as concise as possible so as not to make it too boring to read.

The first time I had tinnitus was in 2012. I was 21, and it happened in a bar in Manchester, where I was doing my Erasmus.

During the evening, I wore earplugs because I was already aware of the dangers of noise. At one point, I removed my earplugs to hear my friends, and it only took a few minutes for me to develop my very first tinnitus.

Luckily, it was only one sound, and it was so faint that I got completely used to it after a few weeks.

I was able to live a completely normal life and sleep without any problems.

Since then, I have always worn custom-made hearing protection that provides minus 25 dB of attenuation.

I used to go to parties and nightclubs without any problems, until 2019, when I went to a pagan metal festival.

The music was very loud, but I stayed at the back of the room and took regular breaks. Of course, I wore my custom-made minus 25 dB hearing protection.

Unfortunately, this did not prevent me from suffering an extremely serious sound trauma that has left me severely disabled ever since. I developed at least five different tinnitus sounds (such as dental drills, sirens, pipes, Morse code, etc.) and hyperacusis.

This festival certainly did not respect the regulatory decibel threshold in France, because I should never have suffered this sound trauma while wearing custom-made minus 25 dB hearing protection.

I still cannot accept that this has happened, when most people go to parties every weekend without any protection and never develop tinnitus, or develop it only after years without protection.

But in short, since that day my life has become a nightmare.

I have no more social life, and above all, I no longer sleep, because the tinnitus wakes me up constantly.

In 2020, I took Naproxen for foot pain for a few days. The result was worse tinnitus.

My ENT confirmed that it is indeed an ototoxic anti-inflammatory. Such bad luck, especially since I could have done without it.

Until 2023, I lived in complete silence, avoiding noisy activities.

My emotional state improved, and I slept much better. I felt almost cured, even though my tinnitus was still loud, and had even considered posting a success story on Tinnitus Talk.

I was feeling so much better two years ago that I started to socialise again, going to bars, parties, and sometimes clubs.

I resumed my social life not mainly for pleasure, but mainly to find a woman.

Unfortunately, this resumption of social life made my tinnitus worse than ever.

I have been living in absolute hell for two years. I cannot sleep at all, despite the combination of medicines I am taking (Mirtazapine, Melatonin, Alimemazine, Quetiapine).

Absolutely nothing works, because my tinnitus is so intense. It wakes me up every thirty minutes on average.

My tinnitus is so intense that I can even hear it in the noisy Paris underground or on a train. Just imagine.

I am living a nightmare. I cannot even go to work anymore because of the lack of sleep.

Fortunately, I have been able to negotiate four days a week of working from home. If I did not have the option to work from home, I would not even be able to work at all.

I am 34 years old and I live alone, locked in my room, with no hope.

I will never dare go back to a social life, given the hell I am going through at the moment.

I only go out to do the shopping and go to the gym, because it is the last activity I have, even though it is very hard to do when I am so tired.

I really do not know what to do.

I am lost. I cry every day.

I have lost everything because of this horrible disease.

I have the bitter feeling that I have wasted not only my youth, the best years of my life, but my whole life.

Thank you for taking the time to read everything.

Perhaps my story will help you put things into perspective if your situation is less serious.

I do not know how I am going to cope with living like this for another fifty years.

I badly need support.

Please write to me. I am going insane. I feel so lonely in my room.

 

[vilebubbles]

I am so sorry. I wish I had advice. I am also living in my room. I had to leave my job, my home, my husband, and my son to move in with my mom because I could not handle the noise at home. I have only had tinnitus for 9 months, but it went from mild to severe within a few weeks back in January after several acoustic incidents and medications. I just sit in this room all day. I am going crazy as well.

 

[Kam75]

I am so sorry for you also, @vilebubbles, but nine months is not that long, if I may say so. You might recover a little in a couple of years if you protect your ears from noise and ototoxic medications.

I can confirm that this terrible condition can improve, but not without a lot of sacrifices, such as giving up your social life entirely.

I forgot to mention that I also have a sort of electric sound that moves in my head. It is impossible to habituate to it, and it is one of the most annoying sounds I experience. It keeps waking me up at night.

My psychiatrist has been trying for years to get me to take another antidepressant, Venlafaxine, but I am very reluctant because tinnitus is listed among the side effects, and people on Tinnitus Talk have said that they developed tinnitus because of this drug.

For now, the only antidepressant I am taking is Mirtazapine, which is considered the safest on Tinnitus Talk, but unfortunately, it no longer works. I have been taking it for at least four to five years.

I really do not know what to do. I cannot stand the lack of sleep any longer.

 

[lostb1t]

Hey man, sorry to hear you are suffering. I have not left my house in a year. My tinnitus is so loud it goes over everything. On top of that, I am burned out and overstimulated. I can only do a bit of browsing on my phone.

For sleep, I can suggest the following supplements:
Magnesium Glycinate, Lemon Balm, Magnolia Bark, Valerian, Skullcap, Passion Flower.

 

[streifzug]

I feel you. I sit in my room all day as well. My tinnitus gets worse from anything even remotely stressful or loud. When people laugh around me, I get intense anxiety. It is so sad.

 

[MindOverMatter]

I still cannot accept that this has happened, when most people go to parties every weekend without any protection and never develop tinnitus, or develop it only after years without protection.

Sorry to hear about your struggles, @Kam75.

I can relate to your story in many ways. Remember that you are not alone in this. Many people around the world are struggling too.

I have been through hell and back, but I made it through. My first step was to accept what had happened, eventually. Moving forward is simply not possible without letting go of these thoughts, because you cannot undo what is done, and replaying these thoughts in your mind only makes it worse. I speak from experience.

It takes a lot of practice to do this, and for me, it also took therapy. Four years, and I still have follow-up sessions from time to time.

Losing hope is not an option, mate. You can do this.

 

[Kam75]

Sorry to hear about your struggles, @Kam75.

I can relate to your story in many ways. Remember that you are not alone in this. Many people around the world are struggling too.

I have been through hell and back, but I made it through. My first step was to accept what had happened, eventually. Moving forward is simply not possible without letting go of these thoughts, because you cannot undo what is done, and replaying these thoughts in your mind only makes it worse. I speak from experience.

It takes a lot of practice to do this, and for me, it also took therapy. Four years, and I still have follow-up sessions from time to time.

Losing hope is not an option, mate. You can do this.

Thank you for your support @MindOverMatter. What does your therapy involve, if I may ask? CBT?

 

[L along the way]

Sorry to read your story. I find it very relatable. I have also been dealing a lot with sleep issues. Recently, I have been taking some Kratom before sleep, and I find it helpful for calming down. However, its legal status differs from place to place, and it can be addictive. But for me personally, I find it helpful to use for sleep from time to time.

Socially, I am also more by myself these days, but I have come to accept and even appreciate that. People can be very nice, but also negative, tiring, and not understanding of your situation. I go for walks in nature a lot now, and I spend time studying topics related to spirituality. Being by myself has become less of a problem, and I try to see it almost as a kind of privilege.

However, I do believe that connection with family and friends is valuable, as is staying connected with society. But in general, I am more focused on being by myself these days. Also, sometimes people simply need a break from others. Some go on retreats and such. I have come to view solitude in a more positive way.

For me, though, tinnitus is still a big issue, and I do experience sadness and stress because of it, along with the sleeping problems. The last few years have honestly been quite hellish. I live with a sense of hope, believing that with the acoustic trauma, if enough time and rest are given, my ears might recover. I do not know whether this is true, but this is what I tell myself every day: give it time, give it time.

I have had many thoughts of wishing it would all be over, but I have never actually taken any steps in that direction. I think that when life is natural and harmonious, there is a natural joy. But when things become injured or harmed, life becomes uncomfortable and not enjoyable. Still, I try to find inspiration in spirituality, hoping that in the long run it will bring more resilience to my life.

One other big change I have made is with my food choices. I have started experimenting with a plant-based lifestyle and have seen very good results from it. As they say, food is medicine. I do feel healthier and have better vitality overall, although the tinnitus is still present every day, sadly.

It has been a journey of ups and downs, but I am trying to take it one day at a time. I pray that, with time, we may all feel better and find ease and joy in life again.

 

[Kam75]

Hi @L along the way, thank you so much for taking the time to write to me.

I've never heard of Kratom, but after a brief search, I see that it's banned in France, which is probably why I've never heard of it.

And I completely understand what you mean when you say that people don't understand our illness.

Indeed, what we have is kind of peculiar. People don't understand why we can't do certain activities any more, for example, or why we're always too tired.

No matter how hard we try to explain our condition, no one can really understand us without experiencing this suffering.

 

[delta784]

You are definitely not the unluckiest. One medication I tried for my mild hyperacusis and tinnitus, Methylprednisolone (intravenous), gave me visual snow syndrome, terrible head tinnitus, reactive tinnitus, dysacusis, and noxacusis. So I am probably the unluckiest among all of you. And yes, people on these forums caused this, because I did not need to use any harmful medications.

 

[Kam75]

Hi @delta784, yes, I know about your story. I have read it. You are very unlucky as well.

But why do you say that people on this forum caused this? Do you mean that someone on Tinnitus Talk advised you to take this medication and you followed that advice without any medical guidance?

As for me, last night I took 22.5 mg of Mirtazapine, 50 mg of Quetiapine, and 2 mg of Melatonin. According to other Tinnitus Talk members and my psychiatrist, this combination is supposed to knock you out. Even so, that cocktail did not help me sleep. I woke up every 15 minutes because my tinnitus is so loud. I cannot even go to work today because of this. I have to work from home.

I do not want to kill myself, but I also do not want to live like this for another 50 years.

 

[Nesty271]

@Kam75 and @vilebubbles, your stories are truly heartbreaking. Tinnitus is an absolute nightmare. Please know that you are not alone in this fight. This community understands your struggles, and we are here to support each other. Keep holding on and reach out whenever you need to.

 

[delta784]

Hi @delta784, yes, I know about your story. I have read it. You are very unlucky as well.

But why do you say that people on this forum caused this? Do you mean that someone on Tinnitus Talk advised you to take this medication and you followed that advice without any medical guidance?

As for me, last night I took 22.5 mg of Mirtazapine, 50 mg of Quetiapine, and 2 mg of Melatonin. According to other Tinnitus Talk members and my psychiatrist, this combination is supposed to knock you out. Even so, that cocktail did not help me sleep. I woke up every 15 minutes because my tinnitus is so loud. I cannot even go to work today because of this. I have to work from home.

I do not want to kill myself, but I also do not want to live like this for another 50 years.

Yes, I had health anxiety. I panicked and asked my brainless ENT for this medication, and she gave it to me. I had no hearing loss, not even in pill form, so it affected my brain.

 

[lostb1t]

I feel you, my man. I don't want to die. But at this point, I see no other option.

 

[Kam75]

@Kam75 and @vilebubbles, your stories are truly heartbreaking. Tinnitus is an absolute nightmare. Please know that you are not alone in this fight. This community understands your struggles, and we are here to support each other. Keep holding on and reach out whenever you need to.

Oh my God, you got tinnitus one year before I was born. That is crazy.

I guess that is not you in your profile picture. The person there looks young.

Thank you very much for your support.

 

[SafeMusicFan]

@Kam75 I am really sorry for what you are going through.

I really, really, really do not mean to give you bad advice or sound like a know-it-all, because we all know how this condition varies for each individual. But I want to try to help you, and therefore I will write a few suggestions that I think may help. I hope they will, but if they do not resonate with you, I hope you will understand that it comes from good intent.

From the words you use in your story, I think the main causes of your current suffering are anxiety, depression, and an extremely severe lack of sleep, combined with isolation. All of these are of course a direct consequence of very severe tinnitus and hyperacusis. Yet, they probably and unfortunately also feed it a bit.

Words like "nightmare," "wasted years," and "lost" tend to feed a constant state of panic and high alert. With the intense multi-sound alarms you must hear, it is no wonder. Not sleeping makes it worse. It becomes overwhelming. Everything seems louder. More panic. The brain has the very annoying tendency to fall back into the patterns it has spent the most time in. The more time spent in that state, the more it becomes the new default.

Even though the super intense sound is definitely a root cause of all this, I believe the lack of sleep is not dictated by the sound itself, but by the anxiety. I cannot prove it, of course. I can only rely on stories I have read and on my own experience.

Some people have had, or still have, extremely intrusive tinnitus, but it seems that often, when their anxiety started to decrease, sleep gradually improved. From my humble experience, my tinnitus, which kept me awake every night in January, no longer disturbs my sleep at all, even though the bad days are still just as loud as they were in January. Loud enough that, for me also, it can be heard in busy trains, buses, cars, flights, over traffic, and sometimes quite overwhelmingly and piercingly. It feels as though I am living inside an ugly old CRT television, at 33 years old. The one thing that has changed between January and now is a significant reduction in anxiety. When sleep improves, your entire health improves, even if the tinnitus remains extremely intrusive. And even though that will not make your quality of life great all of a sudden, once you sleep better, some things get better, even if only a little.

Here are some things I would recommend. They are not rocket science, but they are coping strategies that have helped me so far:

• Long walks in nature
• Ice cold showers, without warming up first. Yes, it sucks, but it takes the edge off the anxiety right away and calms your system for a while. A good solution for crisis moments
• Long warm showers, where the relaxing effect helps
• Going outside, leaving the city, taking weekend trips to the countryside, running outdoors, really anything that gets you outside and into quieter environments
• Planning some of your dreams, such as traveling to different countries, places to visit, imagining skydiving, and so on. These may not happen now or ever, but planning them concretely takes you on a mental journey
• Reading manga or anything that is calm, quiet, somewhat absorbing, and takes you on a journey
• Learning a new language or skill
• Very gradually reducing hearing protection when it comes to sound levels that should not be dangerous. Retreat to silence if there is a spike. Try again. Take baby steps
• Doing intense physical exercise, giving it your all
• Reminding yourself that there will be improvements in tinnitus treatment in the next 10 to 20 years. The research field in this area has never been so active. Coordinated research will advance. AI will improve and may help. It may sound like a lot of years, but even if I have to wait until my 50s, that could still leave decades ahead with an improved quality of life
• Reading many success stories on my bad days, especially those from people who had it very severe
• Working on accepting the fact that I cannot do anything about the tinnitus volume, and trying to find moments of happiness despite it

In a nutshell, it is not easy. At all. But there is hope. You cannot affect your tinnitus directly, but there are other things that can improve, such as anxiety and lack of sleep. Let us take it one day at a time. At 34, there is still an open sea of possibilities for you to recover over the years, even if only a little. You can get better. Sending you lots of support, and I hope this helped, even if only by a small margin!

 

[Kam75]

Thank you so much @SafeMusicFan for your long message of support. I really appreciate it!

You are right about everything. I am indeed depressed and have been for many, many years. I was depressed even before I had tinnitus, so you can imagine how I feel now.

My psychiatrist has been trying for years to put me on a second SSRI-type antidepressant, in addition to the Mirtazapine I am already taking, but I have always refused out of fear that it would make the tinnitus worse.

I think I am going to have to agree to take a second one.

As for anxiety, that is also true. I am very anxious by nature, and that runs in my family. It is not easy to manage.

As far as sleep is concerned, it is a real vicious cycle, because you need to sleep well to make the tinnitus less intrusive, but how can you sleep when your tinnitus is extremely intrusive?

Anyway, thanks again for all your advice. I woke up in a pretty good mood when I read your message. And thank you all for being here. It is great to be able to talk to other people who suffer from the same condition. We feel understood.

Love to all

 

[MindOverMatter]

Words like "nightmare," "wasted years," and "lost" tend to feed a constant state of panic and high alert. With the intense multi-sound alarms you must hear, it is no wonder. Not sleeping makes it worse. It becomes overwhelming. Everything seems louder. More panic. The brain has the very annoying tendency to fall back into the patterns it has spent the most time in. The more time spent in that state, the more it becomes the new default.

Great write-up, @SafeMusicFan, and I agree with everything you wrote.

@Kam75, you asked about the therapy part in a post I wrote. Yes, CBT is a major component of this therapy, along with being mindful, creating new neural pathways, and supporting neuroplasticity. The post from @SafeMusicFan touches on many aspects of CBT.

If you can afford it, I would recommend, in addition to all the great suggestions from @SafeMusicFan, also trying to find a therapist who specializes in tinnitus and hyperacusis. It is important that they have this specific understanding.

As mentioned in a previous post, sleep, along with managing anxiety, is crucial. Without sleep, the brain never gets the opportunity to reset and repair. Most of the repair processes in our bodies happen during proper sleep.

There is hope, and you need to hold on to it. You will get better. Feed your brain with those positive thoughts, and let go of the "why me" ones. They do not help. I have been there, and they really do not. This is even more true if you are naturally an anxious person.

Better days are ahead. Trust the process and follow some of this advice.

 

[Carolan]

Thank you so much @SafeMusicFan for your long message of support. I really appreciate it!

You are right about everything. I am indeed depressed and have been for many, many years. I was depressed even before I had tinnitus, so you can imagine how I feel now.

My psychiatrist has been trying for years to put me on a second SSRI-type antidepressant, in addition to the Mirtazapine I am already taking, but I have always refused out of fear that it would make the tinnitus worse.

I think I am going to have to agree to take a second one.

As for anxiety, that is also true. I am very anxious by nature, and that runs in my family. It is not easy to manage.

As far as sleep is concerned, it is a real vicious cycle, because you need to sleep well to make the tinnitus less intrusive, but how can you sleep when your tinnitus is extremely intrusive?

Anyway, thanks again for all your advice. I woke up in a pretty good mood when I read your message. And thank you all for being here. It is great to be able to talk to other people who suffer from the same condition. We feel understood.

Love to all

@Kam75, I hope this message might be of some help to you.

What truly helps is working toward a better mental state. This creates the right conditions for positive changes in the brain through neuroplasticity. Our brain is remarkably capable of adapting in many situations.

One point I think is particularly important in your case is sleep. If you have been sleeping poorly for an extended period, it undermines your recovery. In addition, a form of conditioning can develop: your brain starts associating going to bed, or the night itself, with restlessness or lying awake. This makes it increasingly difficult to return to natural, restful sleep. This phenomenon is known as conditioned insomnia, and it is well documented in research. The challenge is that sleep is absolutely essential for enabling positive changes in the brain. Poor sleep maintains the negative cycle.

I am also writing this from my background as a psychologist. I know how carefully one should approach medication. At the same time, in some cases, it can help to temporarily calm the brain (not to suppress tinnitus) in order to break the negative sleep pattern. This could mean using medication such as Alprazolam or Clonazepam for a few days, always under the guidance of a doctor and with a clear plan. It is by no means a long-term solution, but it can help jumpstart the recovery process.

If you are looking for some inspiration, I can recommend the book Rock Steady by Joey Remenyi. It is not the strongest scientifically and a bit repetitive, but the core message is sound: the brain can change, provided you create the right conditions.

Finally, I would like to leave you with this thought: do not get caught up in endlessly searching for the solution to reduce tinnitus. This often backfires and leads to frustration. Instead, focus on building your resilience, improving your sleep, and fostering a healthier mindset. That, in my view, is where real progress lies.

 

[SafeMusicFan]

As far as sleep is concerned, it is a real vicious cycle, because you need to sleep well to make the tinnitus less intrusive, but how can you sleep when your tinnitus is extremely intrusive?

I am really glad if my message lifted your mood a little bit.

I wanted to quickly respond to the part I quoted. Again, take my message with a grain of salt. I am not a sleep expert and can only speak from my own experience.

When I read, "How can you sleep when your tinnitus is extremely intrusive?" I see it as indirectly implying that, in order to start sleeping better, a reduction in tinnitus volume is required. Of course, a volume reduction would be amazing and would certainly help, but the problem is that we usually have no control over the tinnitus or its volume. Therefore, it can lead to this kind of narrative or cycle:

1. I cannot sleep because of extremely intrusive tinnitus.
2. Tinnitus needs to become less intrusive for me to sleep.
3. Tinnitus is not becoming less intrusive.
4. I cannot control my tinnitus.
5. I still cannot sleep.
6. Tinnitus is becoming more overwhelming.
7. Back to step one, now with additional tiredness, anxiety, and so on.

It is an extremely hard cycle to find yourself in, and getting out of it is no simple matter. But I think what could help is to try to assume that your brain and body are capable of entering sleep mode despite the noise. Try to tell yourself, "The volume is not going to change right now. But it must still be possible to find ways to sleep and rest regardless of that. Many people with loud tinnitus have gotten their sleep back after a while. I will get mine back too." Now, this is not just mind-over-matter stuff, and that mindset alone probably will not work magic, but it is a harmless mindset to adopt, and it could help.

Again, it is often more anxiety than the noise itself that disrupts our sleep. Think of how some people manage to sleep outdoors in extremely noisy environments, such as airports or train stations, yet still manage to get two or three hours of deep, hibernation-like sleep in the middle of it. On the other hand, think of how someone can spend a night without sleeping in a quiet environment simply because they are worried about something, for example, about missing their early morning flight or not hearing their alarm.

A couple of additional tips for sleep:

• Build up to your pre-sleep time with activities that help you feel as relaxed as possible.
• Try to maintain a consistent sleep and wake schedule, regardless of whether you fall asleep right away or not.
• Try to avoid using your bed during the day, so your mind links it strongly to nighttime sleep.
• Write down every instance when you manage to sleep even a bit longer than usual (for example, one hour instead of thirty minutes). The idea is to convince yourself that gradual improvement is possible. As your confidence grows through recorded experience, anxiety levels may start to drop.
• Distract yourself as much as possible to avoid focusing on the sound or the sleep issue. A few of the tips I shared in my previous posts could help with this.

Cheering for you. You have got this. Time and the odds are still on your side. I hope this helps a bit!

 

[MindOverMatter]

If you are looking for some inspiration, I can recommend the book Rock Steady by Joey Remenyi. It is not the strongest scientifically and a bit repetitive, but the core message is sound: the brain can change, provided you create the right conditions.

Rock Steady on neuroplasticity and related topics is an awesome book. I can recommend it as well. It is an easy read, inspiring, and interesting.

 

[Kam75]

A couple of additional tips for sleep:

• Build up to your pre-sleep time with activities that help you feel as relaxed as possible.
• Try to maintain a consistent sleep and wake schedule, regardless of whether you fall asleep right away or not.
• Try to avoid using your bed during the day, so your mind links it strongly to nighttime sleep.
• Write down every instance when you manage to sleep even a bit longer than usual (for example, one hour instead of thirty minutes). The idea is to convince yourself that gradual improvement is possible. As your confidence grows through recorded experience, anxiety levels may start to drop.
• Distract yourself as much as possible to avoid focusing on the sound or the sleep issue. A few of the tips I shared in my previous posts could help with this.

These are the types of advice I received when I underwent CBT for insomnia.

Yes, a few years ago I tried it. I completed two full courses of CBT for insomnia, four days per course, so eight days in total, with three-hour sessions each day, all held in the hospital.

Unfortunately, it did not help.

I am going to try to stay as positive as possible, but it is really not easy.

Thank you all again for your advice. I know I am saying thank you a lot, but it truly means a lot to me!