Tinnitus and Hyperacusis from No Specific Trigger — Path Into the Unknown

Hello all fellow sufferers, this is my story. I'll try to keep it short:

February 2023:
I was sitting in a coffee shop and suddenly noticed that everything seemed unusually loud. In the days that followed, my left ear somehow felt slightly clogged. I thought it was due to earwax and ignored it for a few weeks. In retrospect, I can't remember any specific trigger like acoustic trauma or anything like that.

March 2023:
I started noticing tinnitus in my left ear that was mild at first, but quickly became louder and louder. This was the alarm that startled me. I went to an ENT, who cleaned my ears, did a hearing test (-30 dB at 8 kHz in the left ear), ordered an MRI (with no findings) and prescribed me cortisone in tablet form. I did not receive a definite diagnosis and was assured that everything would be fine again.

The time that followed was absolute horror. Heart palpitations from the cortisone, no sleep for weeks, and very loud tinnitus. I was immediately suicidal. After 2 weeks the tinnitus suddenly stopped and I had a complete day of silence. I cried with joy and hoped that now everything was over. Unfortunately, it came back the next day, but a little more bearable than before. I continued to feel very bad, but the hope that it would continue to subside kept me going.

Since then, unfortunately, it has remained this way: An electric hissing sound in both ears, at about 10 kHz. It follows a certain rhythm. On bad days I hear it all the time and everywhere except in the shower. On good days it is almost gone and I feel like before the onset. Currently I have about 2 silent days per week. The change always happens while I am sleeping. In addition, I have hyperacusis, which is particularly evident in that car brakes seem louder than before and there are occasional clicking noises and fluttering in the left ear.

Now:
Somehow I have managed to continue going to work (quiet office job). But my social life has come to a complete halt. My partner left me in April and I can only do small activities on the good days. I don't listen to music anymore, I don't watch series anymore and somehow I just try to cope with the normal challenges and errands of everyday life. It's not living anymore, it's just existing. I have tried acupuncture, take daily Gingko biloba, Magnesium and vitamin B12 - all to no avail. I try to live healthy (no alcohol, caffeine, medication etc.), but unfortunately I started smoking again out of desperation.

I only exist now because I can breathe a little on the quiet days every now and then. I've never experienced anything so awful and wake up to this nightmare anew every morning. Honestly, I don't know what will happen next and how long I can keep this up. I sometimes persuade myself to believe in medical progress, but I am more than skeptical, because tinnitus is so complex, mysterious and unpredictable, that I do not believe in any real relief within my - statistically speaking - remaining 40 years of life. It is pure survival instinct why I have not taken the further steps after an email inquiry to Pegasos so far.

I am sorry that this is a very negative post, but this inconceivable suffering is the reality - my own and that of many others here. I hope we somehow get through this.

P.S. Please excuse my English, I'm not a native speaker.

 

Hey @Chess, I am so sorry you are dealing with this. The electric hissing of very high frequencies is truly earth shattering. That was my first sound that came on in my right ear when I had an infection going into the inner ear, causing nerve damage and SSHL starting at 12 kHz. It is so debilitating because, since it is so high, it's not only sound but a feeling. It sounds/feels like you have electricity on in your ears. Mine is very reactive, as in it gets more intrusive/worse with sound exposure.

What has given me some relief is playing Neuromodulation beeps. You can download the TinnitusPlay app, and then click on the "Neuromodulation" box. On the top, you can set the frequency to 10,000 Hz. Make sure you have volume set to low and no listening through earbuds, just your speaker. Listen to those beeps and see if it gives you any residual inhibition, meaning dampening/lowering your tinnitus.

Do you have any other tones or just this constant 10 kHz tone? My guess is that your hearing loss in the left ear dips further down at 10 kHz and that is what you're hearing; your hearing loss sound.

 

Welcome. I know this is not a community you would like to be a part of, but I hope you find some comfort here.

It's worth noting that if the noise happens in an random manner and usually after sleep, you may have jaw issues. Maybe check with a dental expert and see if you grind your teeth at night.

 

Hi there @Chess - Thanks for sharing your story. Sorry to hear you're suffering from this affliction. It's such a challenging, life-changing condition. I hope you're able to cope with it as time passes.

I wanted to mention that we share a common characteristic. My tinnitus also changes in my sleep. I have quiet days and loud days. I posted about it a few times here in the forum, if that interests you. I often mention in my posts that I've learned that my tinnitus is cyclical -- the days have a pattern (like, loud, mild, mild, quiet, repeat).

I also have hearing loss, and no single loud event caused its onset. My best guess is that my hearing loss put me at risk, and just before my tinnitus began, I endured months of very high stress at work.

If you like, we can share notes on how our tinnitus behaves to see if we can learn more. There are others on the forum with intermittent tinnitus, but I've found that the more common situation for people here is a constant noise-induced or medicine-induced tinnitus.

By the way, nice use name. I take it you like to play chess? I'm pretty bad at the game. I do like to play Go, but I'm bad at that game too, lol.

 

Hello @ErikaS.

Thank you very much for your sympathy. You are right, by the fact that the noise is not static, but oscillates (SsSSsssSSSssShhhSSShhSShh), I can also "feel" it. It is virtually impossible to ignore. It sounds similar to this video, but just unfortunately additionally oscillating:

Tinnitus Masker 10kHz Noise is Out of This World

On the bad days, I also notice reactivity. That's why I stopped listening to music or watching TV. On the good days, however, the reactivity and hyperacusis are almost gone - totally strange. It's so bizarre that I can live almost normally on the good days, only to always fall into the deep hole of despair the following day.

I only have this sound so far. I also suspect that the hearing loss is even more severe outside of the regular audiogram. It also fits with this that it is a hissing sound and not a tonal sound - multiple damaged frequencies.

What depresses me the most is that in the 8 months I have felt I have made no progress other than just hanging in there. Quality of life has dropped to an unimaginable minimum: poor sleep - working with reduced resilience - lying in bed reading about tinnitus - repeat. I often even lack the energy for exchanges with friends and family. One goes on, but does not know exactly what for at all. I have to watch myself deteriorate and can't do anything about it.

Friends, family, and colleagues mean well when they worry about me, but inside I hate suddenly being so pitiful, since before I was someone who was strong, independent and handled everything well on my own. Officially, my health condition was not the reason for my ex-girlfriend's breakup, but deep inside I suspect that she realized that a normal life with me will not work anymore. I felt I was at my peak before the crash.

However, I never wanted to be part of this forum, but I am grateful for encouraging words, helpful tips and the feeling of not being completely alone in this incomprehensible parallel universe.

Thanks for the advice. Recently my tinnitus has been changing in the middle of the day. That's why I don't think it's related to my jaw. I can't influence the intensity by jaw movements either.

Your pattern doesn't sound too bad with about 1-2 bad days in a week. For the past few weeks the intervals between my good days are getting shorter again - maybe a little glimmer of hope. I will now also start keeping a log about it and then we can share our experiences.

Yes, I love chess and quiet activities in general, so the loss of silence hits me extremely. If it serves your distraction, we could play online from time to time. I'm not good at Go either, it's too abstract for me.

 

Hey @Chess, I totally missed your comment here. Yeah, 1-2 bad days a week isn't too shabby. It's interesting, it sounds like you favor having shorter intervals between your good days. I tend to favor having longer intervals between my bad days. My bad days have been hard to deal with, so I prefer longer cycles, even if it means also not getting a good day for a while. My longer cycles tend to be filled with mild days, like BMMMGBMMMG, etc. Mild days aren't so bad for me these days. Their volume has gone down for me over time.

Have you noticed anything about your sleep that affects the kind of day you're having or the volume or quality of your tinnitus?

I've noticed that getting more deep sleep helps. I tend to have lower volume and less agitated tinnitus if I get a good amount of deep sleep.

I'm sometimes able to control the kind of day I'm having if I catch my tinnitus in time when it ramps up in the morning.

We chatted about this in another thread, but I wouldn't be a good chess partner. I'm pretty bad at the game, and I haven't had much passion for playing either chess or Go these days. Happy to talk about hobbies though. How long have you been playing chess?

 

After 2 good days, today was another damn bad one that made me immediately despair again. I do not know how I will ever get used to it. Good days mean wanting to live, bad ones mean wanting to die - what a bizarre "life". I can hardly think of another impairment that traumatizes you so deeply and just doesn't redeem you.

I can't see a direct correlation between sleep quality and intensity, but I have noticed that especially the last sleep phase between 4 a.m. and 7 a.m. seems to be responsible for the change. This means that if I wake up at 4 a.m. to quiet tinnitus and don't continue sleeping, it stays like that for the whole day. However, if I continue to sleep, I'll wake up at 7 a.m. to loud tinnitus that will last the whole day. Rarely it calms down after 1-2 hours and surprisingly I even get another good day until the next sleep roulette.

You can try analyzing it endlessly, it stays a damn mystery. I hate it so much!

 

This describes mine extremely precisely. I think we have rather similar tinnitus characteristics. I've had my tinnitus for about 19 months now, and it's slowly gotten better in several ways. One, it's been easier to cope with the loud days. Don't get me wrong, they still suck pretty bad, but I can get on with things in my life despite the serious annoyance. Two, the mild days have gotten really mild. This started occurring around the 1 year mark. Three, the average cycle length has increased; it used to be a loud day every 3 days and now it's a loud day every 5-6 days. Four, I'm more often able to calm down my morning loud tinnitus even if, for example, I go back to sleep at 4 a.m. and wake up at 7 a.m. to loud tinnitus (meaning, I can make a loud day a quiet day).

What I've been doing is this: (1) I try to sleep on my side the whole night (my hypothesis is that poor breathing plays a role; side-sleeping helps me breathe more easily, reducing stressors due to breathing through the night), and (2) whenever I wake up in the night or morning and I happen to hear my tinnitus, I listen to YouTube videos for a while through a pillow speaker with my tinnitus ear (my right ear).

Now perhaps I don't need to do either of these and it's just coincidence and it's just the passage of time that's the real factor. But I kind of feel these things are helping me.

I'm really at a loss as to why there's the 4 a.m. - 7 a.m. spike. I'm guessing it's related to cortisol, but who knows. I agree, it's vexing that it keeps reoccurring.

 

That's exactly how I feel. Going from someone strong and independent to a wreck.

It is crazy your tinnitus came "out of nowhere". But there must have been a trigger, and apparently it is not uncommon for tinnitus sufferers to not know where it came from. I bet it could have been some sort of viral infection that was ear specific and went otherwise unnoticed. The hearing loss you were diagnosed with is probably the result of it - and the cause of tinnitus.

I am also surviving because I am getting some moments of respite. Today I had a horrible day, clearly linked to something else - I woke up with a mild headache, later had some diarrhea. By themselves these symptoms were not that bad at all, but sent the tinnitus and hyperacusis in overdrive. I am quite convinced tinnitus is neuronal "miswiring" in the brain, so the net effect is we "hear" some neurons firing, that normally would not be aware of. Bad days make these neurons fire more, ergo, louder tinnitus.

Good luck to you.

 

Thanks for sharing your experience and especially for the hope that it can get better with time.

At the moment I need every little motivation not to give up.

Now, after 8 months, I am currently at a very critical point. In the beginning, there was hope it would subside, so I kind of kept going. Now I notice that my energy continues to decrease to defy this beast on a daily basis, especially since I can't see any real progress. In addition, after the initial shock phase, I am only now really realizing what I have lost: My health, my girlfriend, my social life, my inner peace, my contentment with my modest life, peacefully pursuing my thoughts, my passion for music, my joy of traveling, reading a book over a cup of tea - in short, my entire self. It hurts to look at myself in the mirror. That is no longer me. I have fought hard to build a solid good life for myself. Now it is destroyed.

I know that sounds like self-pity, but it's just infinitely deep sadness due to the felt powerlessness to regain my life. I fight every day, but deep inside there is a crippling feeling that I can't win this fight - and the more I fall apart, the more I don't want to keep fighting it.

 

Yes, the feeling is brutal that you now receive benevolent sympathy when you were previously a self-directed doer whose help many have sought. That is also the strange irony: I was always the one who helped many. Now that I need help involuntarily, no one can really help me except pats on the back.

Maybe you're right about the infection. I had an argument with someone last December who ended up spitting in my face. I felt even then that it could still linger. Well, that's pure speculation.

I'm sorry you had such a bad day. Honestly, that's exactly what I'm afraid of. How will I cope with other possible illnesses if so much strength is already lost to tinnitus?

Our good days show us that the switch to calm the neurons still exists and can be triggered. Whereas our suffering is severe, the underlying cause is actually quite mundane. So I agree with the opinion of some here that a treatment that really works can't be found until the granular digital imaging of the overactivity is fully possible.

Stay strong. I'm kind of trying, too.

 

I can relate with a lot of what you're going through. The sudden onset and onslaught is upending in just about every aspect. I'm really sorry to hear how much you've lost as a result. It's a no-win situation, and it's hard to fathom finding a way to live with it, as if life is on hold until it goes away or at least diminishes considerably. That it's variable makes it very tempting to search for mechanisms to keep it at bay.

I went through a terrible downhill spiral when mine started -- anxiety through the roof, panic attacks, depression to the point of suicidal ideation. I had to self-admit myself into a psych ward for a while because I didn't know what else to do. All within the first few weeks of it starting.

If my trajectory is any guidance, it's possible to get past the low point and begin to engage in your life again. Things may not be the same, not with dealing with such a variability of tinnitus symptoms, but it's possible to cope, habituate at least some of the time, and find a way to live again and find happiness.

The turning point for me was when I started practicing acceptance. It's tough to accept the fact that this unwelcome, chronic, peace-stealing condition was thrust upon you, potentially for the rest of your life. Acceptance seems equivalent to defeat and hopelessness. But I found it to be the opposite. It's the thing that turned down my anxiety and helped me turn the corner. What I accepted was rather specific: I accepted that this condition was a part of me at least for the foreseeable future, so I had to learn to live with it and continue living my life. Acceptance isn't a one-time event, like turning a switch on. It's something that I've had to apply daily, regressing often, but continuing to practice until it became second nature.

But I sincerely hope you find your way through this however you come to terms with it and you're able to reduce the anxiety, stress, and despair of it all.

 

I just can't understand how f*king stupid this brain is - creating sounds to torture itself. Yesterday was a quiet day and I could live a little, but today my primitive brain is electrocuting itself. This is so senseless and cruel at the same time. Suffering beyond imagination. In a few days I turn 40 years old. By now, this is my last goal.

Thank you @Joe Cuber for trying to give me hope. I can't see getting so far like you. I am fully overwhelmed. It really feels like getting punished ever again after one single day of little hope.

 

If you're having good days after 8 months in, I think you're doing well.

It took me over a year to get good days.

Remember the new phrase of Tinnitus talk by @gameover; it takes, Time, Patience and Protection (TPP).

 

I have had good (nearly silent) days since the onset, so I'm not sure what this has to do with the timeframe of 8 months. Currently, it is changing a lot (2 good days - 2 bad ones - repeat). I can't pinpoint any specific causes. I'm just so tired of it.

 

Short update:

I think I've gotten an initial idea of what habituation might feel like in the last few days. The noise was effectively unchanged, but I was less overwhelmed by it. Hence, it felt quieter somehow - not the ultimate relief, but "okayish". I hope it continues like this. Keep up the hope!

 

I want inner peace. I want eternal peace. I want to go. Please God, let me fall asleep and never wake up again.

 

Hello @Chess.

I’ve had tinnitus for thirty years. There were no forums thirty years ago, just books out of the library but we all found our way. So if I can do it; and it was 1985, I’m pretty sure you can do this.

I totally agree with @Jupiterman that you are making steps to getting better.

I brought two children up, worked, attended university and my tinnitus was horrendous back then 30 years ago. But it got better.

Just have faith x

 

First of all, I'm almost embarrassed to appear so tearful. A few days ago, I was still encouraging @gameover, but now I'm down again myself. It's complicated: On the one hand, you have a responsibility to the other fellow sufferers here not to fuel their hopelessness too much with depressing posts, but on the other hand, this is the only place where you feel understood in your suffering.

I want to believe in getting stronger, but often I feel overwhelmed by the amount of suffering. You read everywhere that the path to recovery is not linear, but the big question for me is: when will I really feel actual progress? It's only human that you have to feel a real improvement in order to keep fighting. At the moment, however, I feel that I always have to tell myself that things have improved by perhaps 0.5%. In truth, the certainty that absolutely nothing has improved keeps creeping up on me. That's why this battle always feels so pointless.

With regard to my life away from the tinnitus, I even have to admit that it has deteriorated further. It takes a lot of energy to maintain my social life. After the initial sympathy from family and friends, a certain dullness has now set in after a year of suffering. They get on with their lives. I manage to get in touch less and less often as I have nothing to report apart from deep sadness. This weakening of contact means that you are increasingly forgotten, as many people interpret your withdrawal as if you are slowly getting on better and living your life again. Unfortunately, the opposite is the case. I can no longer keep in touch as all my energy is used up trying to get through the working day and the often sleepless nights. I am at a loss.

I could never understand why some people want to end their lives, but I have to honestly admit to myself that the prospect of eternal peace - even if I can no longer feel it as such - is increasingly forcing its way into my thoughts.

Thank you @Eleanor89 for your kind words. I really appreciate your attempt to give me hope. But at the moment I can't do too much with it. Like I said, I need an actual, factual improvement to give me new hope. Motivating words are nice and important, but at a certain point of suffering, action in the form of a reduction in volume must also take place. The big question is if and when.

 

@Chess, I understand, agree, and feel you 100%.