My Story of Tinnitus, Hyperacusis and TTTS — Not Improving After Acoustic Trauma

Dear all,

I would like to share my whole story, in the hope to get some support, that maybe someone can relate and to warn others in their early days of noise induced tinnitus, if they might read it.

I am 32 years old, male, from Germany, I have always loved loud music, was going to concerts, used headphones loudly, played music in the car loudly … without giving a second thought to my hearing, as it always went well …

I developed tinnitus after an indoor concert about 10 years ago. First, it was a bit distracting, but it went down very quickly to a level where I would only hear it in silent situations – and even then it was quiet. It did not bother me at all – and so again, I did not give it a second thought and continued with the loud music.

That was until 4 months ago. I have been to another indoor concert. It was a concert of Limp Bizkit, a Band I always wanted to see since I was a kid … now it „finally“ happened. Little did I know, it would change my life for the worst…

I went with my old school friends, so the retro feeling was perfect. It has been an amazing evening, we had a lot of fun. I just finished my exam and engaged with my GF, I was so happy that I could celebrate it this way. I was enjoying the time so much that I did not think about ear protection … even though I knew an indoor concert already gave me T the last time, and there I was a lot younger.

From this evening on, everything spiraled down very quickly into negativity.

So after this concert I got loud Tinnitus, very high pitched ringing in the middle oft he head. ENT hearing test showed a 40 dB dip at 4 kHz. I took meds (cortisone pills and infusions) which did not help. I got very depressed and thought my life was over. I went to HBOT which also did not help … but somehow, after 3 months, I noticed a difference. I had a problem in the family coming up which distracted me from my tinnitus thoughts. It felt like the tinnitus related anxiety was exchanged by the family stress anxiety … I was still feeling bad, but tinnitus was not an issue in this time. I do not know if you can call that habituation, maybe it would have stayed that way … or maybe not.

But then I did something really stupid. Much more stupid than all the stuff before. A friend invited me over, he got a new car. We were driving in it, it had a big car hifi stereo installed. He wanted to show me how good it was. Since I thought I habituated and felt well again, and since I got earplugs with me which I then inserted, I said OK, but just for a short time please. He cranked it up and the base was massive … I do not know why I did not ask him to put it down or why I did not leave the car … or why I just said NO … I just can’t explain why this happened. Seems like it was pure stupidity then ….

Instantly, my ears felt full and my tinnitus was back like before... no wonder this unhabituated me. Of course I fell in a deep, dark hole. I went to HBOT again just to feel a little more save and also did a hearing test at the ENT. It did not show any damage like before … at that point I still thought, well that’s good, seems like nothing happened. Even the hearing damage from the concert healed, as it seemed.

After some days, I developed a second tone. It sounds like having a cricket placed in the right ear. It is intermittent, sometimes it is chirping gently, sometimes it sounds like the crickets are on crack. Loudness and duration of the sound do also vary.

Of course, this sound scared me a lot, but I adjusted the best I could. I developed a mild hyperacusis, but I did not feel the urge to protect against everyday to moderate sounds. I did not yet discover Tinnitus Talk at that time.

Which led me to my next mistake. I had a professional cleaning at the dentist. I knew it could get loud, so I brought my earplugs. I put them in, the dentist did ultrasonic cleaning. I asked him in advance if it is loud, and he said, it’s ok, and it won’t be long. I trusted him ….

I do not know what the experience would have been like without earplugs, but I felt like the occlusion effect ramped up the volume massively … I was left with a spike and a new white-noise tone that appears in my right ear when I hear certain frequencies, like fans or hair driers. I was so desperate, so the ENT did a hearing test again …. And again no damaged shown on that. I said there must be something to it as noise always makes it worse … so he said we will check the inner ear. Unfortunately I did not know what the tympanometry does to your ears … so I did an OAE test (harmless) and the tympanometry … I thought it is that loud because I have hyperacusis … I trusted the ENT as he knew I had acoustic trauma and would not do a procedure that even harms me more … but when I checked what this test is all about (95 dB right in your ear with headphones), I knew I was screwed. Tinnitus spiked and changed again. Since then, I am having 5 different tones, coming and going, 3 of them 24/7, two intermittent ones, and regularly I get little spikes for a few minutes with new random high pitch squeaks. It feels like every time I listen, I hear something different in my ears. My hyperacusis got worse, certain sounds cause TTTS and I developed phonophobia, plugging my ears all day since moderate noises already caused spikes in the last weeks.

I do not know where this is going … I am isolating myself in the fear of sound, if I try to go „unplugged“ my tinnitus spikes and I get massive anxiety attacks for days, I am afraid of wax buildup because I use plugs everyday … I am afraid to not be able to ever habituate to this concert in my head as there is always something new and scary … everyday it get’s harder to get up and go to work … I am not smiling anymore and people around me are noticing it … yet noone can understand what I am going through … I feel my relationship is endangered and everything is just getting worse and worse ….

Anyone who had a similar experience with multiple noise exposures in a short time? Is there any hope?

Anyone who can relate and has some advise for me, maybe?

Those who plug their ears all the time: how do you get your wax out safely?

Where do you get you extended audiograms? Here in Germany, noone knows about those … I just would like to know what damage I have done

This whole situation is eating me alive and I feel so damn guilty …. It feels like having lost everything in life.


I feel so cornered and left alone since noone can help my ears and noone understands the psychological battle I am going through … everything became such a struggle ... every day is just about avoiding the development of new tones and spikes .... where should all this ever end?

 

i have no idea about the extended audiogram?

do you know about bio-science focusing on repairing inner ear hair cells, that could be a potential treatment in the near future?

 

Though four months have already passed, your spike might still reduce to some extent. I've read other stories by people saying it took a year or even two years for their tinnitus to go back to baseline.
(If you're looking for some positive research news: Neuromod, a company from Ireland, is launching a new device against tinnitus next year. You can find the thread here.)

Some people call this reactive tinnitus, others say this is hyperacusis (noise sensitivity). It's not uncommon for tinnitus to act up when you hear certain sounds such as a faucet, people clapping, the shower, and so on. From what I've read on here, this reactive element oftentimes goes away with time.

So sorry to hear what happened! Unfortunately, there are many, many stories like yours. ENTs simply aren't educated enough on tinnitus and hyperacusis. It's really a shame.

Moderate noises causing spikes is probably due to your worsened hyperacusis. As your hyperacusis improves, your tinnitus should become more stable.

Some things I would recommend

• Give your ears a break, don't go to loud events even with hearing protection
• Don't listen to anything through headphones/earplugs for a while
• Listen to white noise or natural sounds during the day and at night (through external speakers)
• If you don't like wearing earplugs, 3M Peltor headphones might feel more comfortable though they're more visible or use shorter earplugs
• Try your best to stay calm to give your body the best chance to recover

Have you called some ENTs in your area and asked them whether they can do an audiogram up to, e.g. 16khz? You might also have 'hidden hearing loss' which can't be detected by a normal or even extended audiogram.

 

ENTs here in Germany (or at least in the region I live in) only know audiograms up to 8khz. They say it is all you need for daily hearing - and the only relevant document to get hearing aids. They even ask me stuff like "why would you want to hear a dog whistle?" It leaves me desperate that persons of Authority who the Patient should have trust in do know so little about all this... and if I try to explain that even if the frequencies might not be relevant for "everyday hearing", there still might be hearing loss there which is causing my symptoms... they just shrug about that. This is beyond ignorant.

Yes, I am following the research section especially about neuromodulation and frequency therapeutix. It gives me hope and helps me to relax a little better. It's just good to know that a lot is going on research wise and that help is on the way.

 

@chaLLas I am so sorry you had such bad luck, where even people you put yourself in the care of wound up hurting your ears more.

I haven't had my ears tested beyond the 8kHz, but I have heard here at TT there are such tests available. I asked my ENT and she said there are some tests like that for cancer patients getting treatments (which must do damage resulting in T and other hearing problems). Maybe you can use that as a lead to find a doctor or facility in Germany which could test you.

At 4 months, patience is probably in order. Like @Autumnly said, things can take 1-2 years sometimes for resolution. I've had T for about 8.5 months now, and things are far different from the first few months. I originally had shifting frequencies, like an eeeeee sound at 9.5kHz and then it moved to 10.5 kHz within a day. Right now it is more of a staticy noise, though there is some variation.

And...beating yourself up will do no good. So give yourself some mercy.

Good luck!

 

Dear @Autumnly,

thank you for taking the time to go through my post and answering.

I also read that the ears can take a long time to recover. My thoughts are that they can only recover if nothing happens from now - which seems impossible to me as moderate noises also caused lasting (until now...) spikes and you can't avoid those completely for 1-2 years ... plus I have dental work to be done with drilling within the next 2 months and also there is my wedding in September next year ... I will protect the best I can, I hope everything goes well.

I am not sure if it is hyperacusis that I have. I definitely developed phonophobia in the meantime ... but it is not like EVERYTHING seems louder. It is just certain noises / frequencies like some peoples (loud) voices, dropping keys or a pencil on the table, dish clenching etc. that seem to be getting increased by my ears and also cause TTTS and in the long term discomfort and fullness.

I am already following your recommendations and so I will until things get better. I will never use headphones again though. If it all gets back to a tolerable level, I will do everything I can to minimize the risk of having a setback.

See my answer to @Contrast for my communication with ENT's about extended audiograms I guess I am having hidden hearing loss as I feel like I have a harder time to understand people if they are not talking clearly and especially when there is a lot of background noise ... this was different before.

 

Thank you for your reply. I will see if I can find a clinic or some other doctors for an extended audiogram. Good idea.

So in this 8.5 months, did things get better or worse? Did you have any further noise exposures or any risks from daily noises? Did you get spikes, and if so how long did they last?

When my tinnitus started 4 months ago and it was only one sound, I did not have hyperacusis or felt vulnerable (yet of course I avoided loud sounds ... but not everyday or moderate ones) and only the tinnitus noise itself was a problem ... the additional exposures just made me feel so fragile to almost everything ... which causes much more problems than "just" the tinnitus noise itself ...

 

q -things get better or worse?
a - I hate to make blanket statements, but things are better, but I hope they will be better yet. And regardless I have to accept whatever it is. By the way I do what I can to reduce the T (on the basis that I need to retain the brain pathways, if that is possible). I used audio therapy for many months, and currently am focusing on supplements which I take 3+ times a day.

Exposure - nothing as severe as my initiating incident, though I attend church weekly and the music level is 100db. So for the the first month or two I tried to use ear plugs for the musical parts, but now I just sit outside the sanctuary while the music is playing. I plan to do this for at least a full year, and maybe two.

As far daily exposures, nothing dramatic. Out of the ordinary 2 weeks ago, I had a fire alarm go off 20 feet from me, and the next day at an auto dealer a car in the showroom had its alarm go up. In each instance I plugged my ears with fingers (actually by pushing the targus flap over the ear canal opening) waited a bit to see if the noise would stop then quickly exited the area. Early on I think those events would have caused me some increase in T, but at this stage, they did not.

Overall spikes, well, yes they come, and they tend to last 3-4 days maybe a week.

I point you to some graphs I made, particularly post 71 but also post 70. The link is to post 71, then scroll upward for post 70

https://www.tinnitustalk.com/threads/coming-into-new-awareness.27547/page-3#post-377358

Try to remove negative thoughts, and remind yourself you can get through this.

 

Hello chaLLas.

I am in the almost exact situation as you. 5 Months ago I shot a shotgun one time and 2 weeks later my tinnitus began. I had ear fullness, pain, and mild hyperacusis that passed after a month or so. The tinnitus didn't bother me too much, it was bearable.

2.5 months after something popped near me and gave me a spike that added a tone. (constant crickets) another round of mild fullness and H.

4 months later (4 weeks ago) I got free VIP tickets to my favorite band. Huge mistake, I will never attend a concert again. I had earplugs. and took breaks, missed half the concert really. Two weeks after the tinnitus gradually spiked. Now I have 4-5 tones, just like you, as well as mild H (keys and plates just like you), and mild fullness.

Really I am writing this to you so you know that halfway across the world someone is in almost the same situation as you. Don't feel cornered or alone. I understand you and your psychological situation.

I will update you as I progress. I know I will get better. Positivity is key.
Stay strong friend, as long as you make no further mistakes, IT CAN ONLY GET BETTER FROM TODAY.

 

Here in The Netherlands sometimes people go to see Dr. Löwe, just across the border in Leer, in Germany. They do high frequency tests and other tinnitus treatments. If you google for that you should find him, I know I did a while back.
Myself, I managed to get into the tinnitus clinic of Antwerp University Hospital, where they offer a hybrid of TRT and CBT treatments, white noise generators, counselling and even neuromodulation. It might be worth trying for you to get in there if you can't find a good place in Germany. They are really good and accomodating.
I even got a brace for my TMJ issues paid by them for taking part in a study.

I've had T for over 4 months now, very reactive at first, so apparently H involved, but that improved over time.

I react most to computer fans and every time I spend 2 or 3 days behind a computer my T changes. I've had tones develop and go away, and currently my T is quite different from what it was at first, although I'm back to one tone per ear and a third head sound during spikes. I had 7 or 8 tones at one point.
All my therapists tell me the reactivity is because somehow I connected spiking with certain sounds initially where a connection is not necessarily present and now supposedly I expect my T to spike from certain things, and thus it does. I am still torn between accepting that and simply not believing it, but it seems to be partly true as every time I relax more, the reactivity it less. I was just cooking with my aunt, spent hours in a supermarket getting the ingredients and we drove to and from there, and all the while my T was spiked. We got home, she turned on the extractor fan and it spiked further. It didn't scare me as I "know" it does.
All the while we were cooking the extractor fan was on, but at some point I got totally absorbed in conversation and talking about this and that. At some point I noticed my T had toned down to a point where I could only hear it in total silence, even with that fan on. This makes me believe my therapists are (partly) correct.

I will see the therapist again in Antwerp in 2 days and see what she says about this as I really do expect some genuine H to be involved.
Especially since my baseline T is now louder than it was in the beginning, but not much. I am not sure if that is because I expose myself to spiking sounds a lot (car, computer fan, etc) or if it is simply a process that would happen anyway. I don't protect my ears at all, yet I avoid loud environments at all cost at the moment and the loudest I do would be a chatty restaurant.
Also the pitch keeps changing. It is lower now, was much higher pitched a while back, and now sometimes for a few minutes my T fades very far back and I almost don't notice it. This makes me feel very mixed about my progress, even though gut feeling wise I have been feeling good for a few weeks now, regardless of T changing, and I can honestly say I'm somewhat back to normal.

I guess my point is, it changes over time, better and worse, don't worry too much, and hopefully you can find a good treatment center.