My Entire Tinnitus and Hyperacusis Story — From Hell to Paradise

Hey everyone. I was asked by a few members on this forum to write a detailed, structured success story (if you can call it that) to show how it is absolutely possible to get out of the worst hell imaginable and have a life again. I'm going to break it down into different months, as accurately as I remember:

It Begins

July 12, 2021. I remember this day as it were yesterday. I was on a leisure trip around the US, visiting as many friends as possible. Throughout my entire life, I always had mild tinnitus (quiet room, single tone), most likely from very serious ear infections I had in my childhood. I always thought some noises were "too loud", whch brings me to believe that I also had a mild form of loudness hyperacusis. On my trip, however, I spent a large amount of time listening to music way too loud in earbuds. And on that day, the 12th of July, I had my first "appearance" of serious tinnitus and hyperacusis. Of course, I went through the whole shabam - going to doctors, no help from them of course, insane anxiety, etc. I would not have called myself very severe at that time, because I could still take showers and walk around the city in ear plugs, but for me my life was over - constant, intrusive (at that time) tinnitus, sleep issues, etc. Over time I came to accept my situation, and life kept going, albeit at a much less active degree (no concerts, no bars, etc).

My Worsening

September 24, 2021. My birthday. A couple days ago, I had a haircut with clippers used very close to my ears. It sent my tinnitus and hyperacusis into overdrive. Over the course of the next few weeks I was worsening daily. I could not do anything, I couldn't wash he dishes, I couldn't go outside without double protection, etc. This spike is what sent everything into overdrive. From this day forth, I was worsening every day, and my tinnitus was getting more and more tones, by the day, by the hour. After 2-3 weeks, my hyperacusis got so bad that I had to start wearing hearing protection 24/7, and my tinnitus tones changed on a minute-to-minute basis. Every single noise was too loud, Lego falling in the floor sounded like bombs, swallowing water would spike me permanently. I couldn't eat food without spiking, I couldn't drink. My life became so limited and full of constant torture, that all I thought about was death. I didn't want to exist anymore, all I wanted to do was sleep to get relief from the suffering in my dreams.

Over the course of the next few months, the worsening continued. My sound tolerance kept falling. My girlfriend broke up with me, my family ostracized me (they did come around, though, thanks to the help of some amazing forum members getting in contact with them - thank you). I was completely alone, in real life at least. The only support I had was from fellow sufferers, and these wonderful people - I thank from the bottom of my heart.

All I did, all day, every day, was research tinnitus and hyperacusis, talk about tinnitus with my peers. I barely ate anything, and eventually I took a loan to hire a friend/caretaker to cook for me, flush the toilet, etc. I also bought a sound booth to sit inside all day while trying to distract myself from the immense torture. Constantly changing and worsening tinnitus and hyperacusis is a beast that, fortunately, not many have to deal with. Having fellow sufferers gaslight severe sufferers like me was heartbreaking, and I was in such a pit of anger and hate that I shit down any positivity coming my way. I still don't think toxic positivity is a good thing, especially for people as bad as I was, though. Also, I would like to mention - near the beginning of my worsening, I briefly would experience stabbing pain in my ears. Also, I would feel deep burning pain in my ears, and occasional fullness. This did not last for long, and I wouldn't say that I had truly experience noxacusis. It went away rather quickly. The horrendous loudness hyperacusis remained, though.

2022, the Worst Year of My Life

I honestly do not have much to say about this year. The first part, especially, was horrendous. Sitting/lying in my earmuffs in my sound booth all day, every day, only opening it to pour water down my throat without swallowing and swallowing as softly as possible overcooked, soft porridge while reading research papers about tinnitus, while jumping at every sound my neighbors made pretty much sums up the entire first part of this year.

In February, my family forcefully had me commited to a psych ward. When this happened, I was assaulted by way more loud noise than I could handle. A strange thing happened, though. My hyperacusis briefly improved to the point when I could talk again and have conversations with people. I do not know why this happened, and I cannot explain it. I do not recommend anyone to expose themselves to loud noise. I started worsening again soon after this.

Closer to the summer, my father eventually decided to help me, and purchased an apartment in a very quiet part of the city. I could finally stay in relative silence without wearing my ear muffs. And this is when my stabilization started.

Stability

After 3-4 months of eating delivered food and sitting all day in my quiet apartment, I started noticing that some noises didn't permanently spike me anymore. I could do more things without hearing protection, like touching paper bags, opening containers, etc. I still couldn't talk very much, but I decided to start pushing myself a little bit. I would try something, worsen, retreat to total silence, try again, etc. I do not know if this was the reason for my improved stability, maybe it was a coincidence. Again, I don't recommend anyone to leave their comfort zone if they can help it. I would do something like go outside at night without hearing protection, try cooking, worsen, repeat. The worsenings started slowing down, my tinnitus and hyperacusis were more stable, and by the middle of the summer I could do things like leave the house, go to the supermarket in my earmuffs, and have small get-togethers with my friends.

By the end of the summer, I could ride in taxis in double protection without worsening too much, and I went to a resort with my friends, where I sang, played the guitar, etc. I worsened pretty badly after this, but I managed to stabilize.


My Time Back Home in the US, Leading Up to Now

I had to move away from Russia for obvious reasons, and under benzos the flight didn't worsen me too much. The next 8-9 months were cycles of me worsening, stabilizing, worsening less and less. I lived with my grandfather in an absolutely silent house in the mountains.

Now, I can travel anywhere I want, by plane, train, cars. I can walk comfortably next to freeways with earplugs. I wear earmuffs only for long car rides, and flights (I can handle then only in ear plugs, and even with no protection, but I prefer not to. Better safe than sorry).

I have traveled to 3 different countries these past few months, and I plan on travelling to many more this summer. I haven't spiked once during my trips, and I can do things like visit bars with hearing protection and go to music festivals, standing all the way in the back with double protection. My improved stability has given my life back to me.

If you have any questions, feel free to comment. I wrote this whole story from my phone, so I may have missed some details.

P. S. I'm not sure if my tinnitus has started decreasing, or if it is insane habituation, but I cannot hear it outside anymore.

 

So happy for you. I hope you reach a point that you no longer even think of Dr. Shore's device that is on the way to the market.

So, what helped you was pushing the limit, right? You said you worsened, stopped, worsened... And the worsening became less and less. What do you mean by worsening? Tinnitus increase? Lingering pain or more sensitivity?

Could you explain more about your hyperacusis, because you said you don't think you had true noxacusis? How was it? Ear fullness from noise? Pain from noise? Or just discomfort?

 

Thank you for writing an updated story. Congrats on your tremendous improvement! It's quite an amazing success story. Also the part about tinnitus. If I remember correctly, you were describing your tinnitus to be so loud it interfered with understanding speech!

Now, the irony is that my "hell" is probably still better than your "paradise". Well, I can hear my tinnitus everywhere, except shower, and some rare moments when I am distracted and there is enough background noise of certain type to not trigger much reactivity. My loudness hyperacusis is mild to moderate. With musician earplugs I can tolerate restaurants, though I do not enjoy them. That's the crux of it - I may be better than you, yet I feel 100x worse.

Good luck and I hope you remain stable or maybe even further improve.

 

I don't know if that helped me or not. I'm sure that pushing the limits helped me somewhat. By worsening I mean permanent increase in tinnitus and temporary worsening of loudness hyperacusis. The hyperacusis would settle down faster and faster, and it went from recovering in a week to a day or even a couple hours. At that point I had no pain, my hyperacusis was massively improved. I only had pain/aural fullness in the first few months after onset.

Everything is relative. I went through literal hell, so the stability I have now is massive for me. Being as bad as I was really put things in perspective for me.

 

Eating takeaway food is the cure? Got it, ordering Uber Eats daily now!

Jokes, good to hear mate.

Long may the recovery continue!

 

The part after “Now...” is very good to hear, I’m happy for you! Let’s hope that it decreases even further and that you will do more things that gave you joy in your “past life”.

I only have moderate tinnitus at the moment, however my anxiety is pretty bad right now and your story has given me so much motivation to give this life a go. Thanks for sharing it.

1. How did you sleep during your worst period and how do you sleep now? Did you take any meds to fall asleep? Do you have any advice in this regard?

2. Is it in your opinion better to overprotect? For example, I have moderate tinnitus but I still wear earplugs at the cinema and weddings, but not in the gym and at restaurants.

 

Reading this is genuinely inspiring and gives me hope. I got driven to the point of suicidal thoughts just by an increase in the tinnitus noise, I didn’t even get pain hyperacusis or anything and while I hear it 24/7 it doesn’t drown out voices.

I ended up on anti-anxiety meds which have basically saved my life but seeing that someone can come back from a far worse case than mine is something I really needed to hear. I’m very happy for you, we’re total strangers but I wanted to say this regardless

 

The important thing is that he's doing well now. No one knows what exactly helps them! This was part of his story, not a joke!

I hate it when people make fun of other people's success.

 

I only had issues with sleep for the first few weeks. I think getting anxiety under control is the most important factor to good sleep.

There is no such thing as overprotecting. Do what makes you feel most comfortable. My opinion is better safe than sorry.

 

It was good to finally get this write-up, I appreciate you doing so.

I completely agree with you in regards to everyone’s suffering being subjective, that’s why I try not to judge anyone’s suffering by their tinnitus level. Believe me, I read some people who are in distress here and I think I’d do anything to have their tinnitus.

I’m similar to you in the respect that I’ve got the quiet single tone tinnitus for years and it was never even an issue. I’ve now been in the multi tonal, reactive, hyperacusis club for the last 3 months so I’ve not got much hope in this reducing but I’m hoping my mindset changes and habituation kicks in.

The question I had for you was in regards to the tinnitus loudness. You’ve always described yours as very loud. I’ve oddly drawn some comfort in this by thinking ‘If this guy can go about his life with his much louder tinnitus, so can I.’ However, I hear my tinnitus outside 90% of the time so maybe mine is a lot louder than I thought it was?

 

I think I may have jumped the gun by mentioning I "can't hear it" outside now. I hear it everywhere, it's probably most likely "habituation". The outside doesn't mask my tinnitus at all, even near a busy highway. At my worst (but when hyperacusis was getting better), 60-70 dB music did nothing to mask it, it blared in silence just as loud. Being outside, in protection, or in silence changes nothing about the volume when it gets that bad.

 

Yeah, loudness is subjective. I would love if my tinnitus was low enough that I couldn't hear it outside. Only the shower masks it completely.

 

I am still shocked and in disbelief what people are able to put up with in order to survive and improve.

As I wrote many times, with what is now moderate tinnitus and hyperacusis, I lost my ability and stretch to live. I am just existing and barely so. Indeed all is relative to what we experience and to what we are able to endure.

 

My tinnitus is screaming and my left ear is in a lot of pain right now, but my will to live is stronger than my will to die, which I couldn't say 4 months ago. I think we will all improve some so let's just remain diligent!

 

Hahaha, righto.

I'm literally stoked for the bloke?

 

I know most people on Tinnitus Talk would love for their tinnitus to disappear or fade to a quiet level. That’s something out of our control unfortunately. Like you, I feel I just the need the stability to get back to life, I of course do not enjoy my multiple sounds or the loudness of them. But it’s the constant risk and fear of making them worse which is truly robbing my ability to live at present, stability will give me my life back and I’ll take habituation in any form it comes.

I completely understand and sympathise with you. Mine has fluctuated an awful lot the last 2.5 months. Sometimes it can be heard very clearly over the shower and sometimes it’s masked by the shower or running a tap.

But this is why I don’t think the shower analogy is a good one. I don’t know the volume of my tinnitus, only that it’s much louder than it used to be and I hear it outside most of the time. But sometimes it can be masked by a 40 dB fridge because it’s just the right frequency, but not the right volume to mask it at all.

 

What a huge relief it must be! I hope you never have to go through that ever again.

I have a question for you.

Did you also have TTTS symptoms and ear muscles contracting, especially in reaction to those sounds that felt too loud such as Lego falling on the ground and sounding like a bomb? I experience the same level of loudness to many tiny sounds as you did, and every time my ear muscles contract and make the eardrum flutter. Is that a symptom you had too?

 

Not to hijack someone else’s success story, but I guess it is relevant given how inspiring I found @AnthonyMcDonald’s improvements. I was able to meet up with work friends despite waking up with anxiety so intense I was throwing up. It brought it right down and I barely thought about my tinnitus whilst there despite the fact I can’t mask it.

Goes to show how people sharing their improvements can have a positive knock on effect. I hope it continues as I get more of my life back.

 

Yes, but very rarely, and mostly it happened at random.

 

Give me total silence or give me death.

 

Your tinnitus and oversensitivity to sound is not unusual @Hardwell, because you are still in the early stages of noise-induced tinnitus. It will improve so give it time. Sometimes it will feel like you've turned a corner, then suddenly you'll feel like you're back to square one, which is not uncommon. Take things slowly and try not to put too much pressure on yourself. The habituation process takes time but with patience you will get there believe me. Try not to mask your tinnitus, this is important. Continue using low-level sound enrichment.

Michael.

 

I thought my tinnitus had basically disappeared a while back, but then it got more noticeable again. Then it went from one ear to the other, then in both, then it got LOUD, and other times it was manageable. Compared to how loud and scary it was when I first got it 20+ years ago, it's not that bad. Not today anyway. When it got very loud recently, it felt like the bad old days. I will never fully adjust to it.

I've tried to figure out why all this happens and it's impossible. Mine isn't that noticeable when outside (at least today, LOL), but if I get to pedaling my eBike harder the increase is certainly noticeable. I'm sitting by a box fan right now typing this and I can certainly hear it over the fan. When I was fixing a flat on the bike earlier I didn't hear it, but that's misleading, right? It was still there, but my mind was away from it when engaged w/ the bike repair.

Thank goodness I was able to move to a top story apt, in the other apt the noise from the tenants above me drove me crazy. It really wasn't that loud, but I over react to noises that are out of my control. So a quiet place is absolutely essential to my wellness. Personally, I couldn't have made it through those 20+ years w/o masking my tinnitus w/ sounds, and they help to drown out extraneous noises. Otherwise, I just try to stay busy and it just is what it is. Very similar to an addiction: just get through today and deal w/ tomorrow when it gets here. Like Scarlett O'hara said, tomorrow is another day, and tomorrow it will be different, you can count on that.

 

Honestly silence is overrated BS lol.

 

Maybe. It would be nice though.

 

Welcome back @AnthonyMcDonald.

 

It would also be nice to have a billion dollars

 

Glad you’re doing much better, @AnthonyMcDonald. Being more stable can sure go a long way in improving quality of life. Really cool to hear that you’re doing more ‘normal’ things now after the immense struggles and difficulties you went through those past 2 years.

It just seems ill advised to want to put something like ‘silence’ on a pedestal if you have tinnitus. I think you’re basically hindering your ability to adapt to a certain degree, making habituation a bit more harder with that kind of mindset (wanting silence). Gotta change that mindset if you want to put yourself in the best position to adapt to tinnitus IMO.

 

Agreed. People scream and cry about silence, but life isn't so bad with brain hell as long as it's stable. Hopefully Dr. Shore's device will reduce it even further.

 

I think once you go through the hell of severe hyperacusis, it makes your tinnitus seem less important in comparison. At least that's how it was/is for me.

 

I agree here. What's made habituation hard for me after a worsening in February 22 is the instability rather than loudness. That added to the extreme sound reactive nature of the tinnitus, I've still not fully habituated. You are right about silence being unimportant though, although it would still be welcome.