Hyperacusis Almost Gone — Tinnitus Not a Big Issue Anymore

[SteveH1970]

Hi fellow sufferers

I first had tinnitus in December 2016, with some hyperacusis. I got habituated to it pretty easily, and after 6 months it wasn't really an issue anymore.

Then, in January 2018, came the big hammer. Unbearable tinnitus set in, and my hyperacusis became so severe, that I couldn't do anything anymore. No bars, no restaurants, no music, no TV, my 4-year-old daughter talking to me made my head explode. I got severely depressed, was home sick for 8 months, lost 25 kilos. I slept 1 to 2 hours a night for almost 3 months. I thought my life was over. I took antidepressants and Xanax, which I know some people are not that fond of, but they definitely helped me get through the darkest days.

After a couple of months it took to get my head around it I started fighting back. I found a great psychotherapist who is specialized in tinnitus cases, who immediately reassured me that hyperacusis can always go away or get better, whatever the reason of the onset. If she's right or wrong, I don't know, but I believed her and that helped me a lot.

ENTs of course could not help me, and I quickly started giving up consulting them. One day I said enough of this. I started going for a drink here and there again. It was really tough, sometimes I left after 10 minutes. I got custom made hearing protection that takes away 20 dB, that helped a lot. The tinnitus perception when you wear them of course is louder, that is not easy to bear, and god mine was loud, I heard it screaming when I was driving my car 150km/h on the highway. I started going to restaurants again. It was tough, I won't deny that, but you need to get going. I'm a metal aficionado. 8 months after the hyperacusis onset I went to my first concert. Life had to come back. Man was I frightened, but I put on my hearing protection, stood at the very back of the room, and had a great evening in the end.

Step by step life came back. My hyperacusis got better, but it was still a major pain in the ass. So was tinnitus. I had some great day here and there where tinnitus was barely noticeable, with very low hyperacusis, just to wake up the next day in hell, and it lasted weeks sometimes, before the next good day.

9 month after onset I went back to work. I started living a healthier lifestyle too. Better food, almost no alcohol, not because I think alcohol makes tinnitus worse, but because you need a clean head to fight back. I go to the sauna and swimming twice a week. I spend time in the nature, I focus on the really important things in life. I focus more on what my needs are, I learned to say no. I still drink a shitload of coffee though, no way in this world am I gonna switch to tea

3 & 1/2 years later, I'm sitting here, I still have tinnitus, but it isn't that much of an issue anymore. Hyperacusis got better to the point that a month ago I went to the fireworks with my now 8-year-old daughter. I had my hearing protection with me, but I didn't really need it, I put it on after 2 minutes just to be on the safe side, but I could have done without. I have bad days here and there, then I put headphones on and listen to "Cicadas" on the ReSound Tinnitus Relief app which imho is amazing. This is not some bullshit advertising, apparently there are in-app purchases there, but the basic app comes with everything I need and you probably too. I even use it on great ear days sometimes just to relax. This app really helped me a lot. What helped me a lot too during really tough hyperacusis days were a pair of in ear Bluetooth headphones with hear through function (I own the Jabra 85t Elite but plenty of other choices out there). If you're in a noisy environment you can decide how much volume you want to let through, while listening to any kind of white noise simultaneously if you feel the need to do so.

As I'm writing this article I have my headphones on and listen to some solid heavy metal of course not on nosebleed volume!

What I want to tell you all is never give up, do not let people tell you that this is permanent, do not let people tell you to stay away from any loud noise permanently. You will end up in isolation, you will become miserable and depressed. Protect your hearing when needed and live your best life, there will be ups and downs, but there will be most probably more and more better days around the corner. It's not an easy journey. Go out though, do what you love.

And when I say protect your hearing, I mean protect when there's a high dB level that can really hurt your hearing. Don't get paranoid, or run around measuring dB's nonstop. I did that, it's utter bullshit. You're common sense tells you what is too loud.

I learned so much about myself through this up and down journey, and you know what, I can say with confidence, that I am a happier and better person now. If somebody would say today ,"I'll take away your tinnitus & hyperacusis in 3 seconds! OK?" I'll say yes without hesitation. If somebody though would say "I'll take away your tinnitus & hyperacusis in 3 seconds! OK?, but you'll become the person you were before" it would probably after some hesitation be a no.

Sounds strange I know but that's the way I feel about it. A lot of good in the bad for me there was actually.

I now live what I consider a normal life, I mostly have good ear days. I have shitty days here and there, but I don't give a flying fuck anymore, because I learned how to deal with it and because I know better days will always be around the corner, and because I'm absolutely convinced that it will get better and better over time.

Don't give up and don't listen to negative people and some of the charlatans on this site, and man there are a lot of them.

I wanted to keep this short, but it seems that didn't work out well

Feel free to ask questions, if you have some, I'll come back to you 100 %, I'll be more then happy to help.

Steve

 

[Jed Rogerson]

Hi mate, how did you get it?

 

[Mr Joel]

Bro, you sound like you were like I am right now, especially the 4-year-old daughter bit lol. Honestly, reading this has perked me up. I will read your post again before the day is out. Just to be able to listen to and enjoy music again will be a Godsend! I have my first tinnitus therapy session this week. I'm 8 months in so really hope this will help me.

Take care.

 

[MindOverMatter]

Thanks @SteveH1970 for your story!

You, and your psychotherapist are correct, in my opinion - there is always a way forward, even though the situation may be and feel as dark as the night. But some days and periods it can be really hard to see it.

...and if you, in the end, can take something positive out of it - after being "through hell" - you have won. This quote by Daniell Koepke, which I personally find a lot of wisdom in, adds up to your story I think:

"I've learned from life that sometimes, the darkest times can bring us to the brightest places. That our most painful struggles can grant us the most necessary growth... I've learned that what seems like a curse at the moment can actually be a blessing, and that what seems like the end of the road is actually just the discovery that we are meant to travel down a different path. I've learned that no matter how difficult things seem, there is always hope. And I've learned that no matter how powerless we feel or how horrible things seem, we can't give up. We have to keep going. Even when it's scary, even when all of our strength seems gone, we have to keep picking ourselves back up and moving forward, because whatever we're battling in the moment, it will pass, and we will make it through. We've made it this far. We can make it through whatever comes next."

 

[Mikkijan]

Thank you for taking the time to write this Steve, it is so good to hear your story.

 

[Vassili]

Thank you for your amazing story. I am 21 months in and I hope that I am at least halfway there. Setbacks make it hard.

 

[SteveH1970]

Hi mate, how did you get it?

I don't know, I have some hearing damage in the 4 kHz range. I went to a lot of concerts, played loud music, listened a lot to nose bleed headphones when I was young. It's a possibility that it is noise induced. It can have other reasons. It is really not important for me anymore.

Don't waste your time on finding out where it came from because: a) you will never find out, b) you'll be guessing and eventually hating yourself for things you did in the past! Always remind yourself that it's not your fault that you got tinnitus &/or hyperacusis, it just isn't! PERIOD!

 

[Oabmarcus]

You are still using headphones? Are you insane?

 

[Simon85]

Thanks for sharing your experience. It gives me hope for better days. I'm sure many others will feel the same. Time seems to be the best healer for most people.

 

[Matchbox]

Tbh if you got better from loud noises it couldn't have been that awful.

And the apathy in follow up of why you got worse isn't great either. For all you know you have something completely treatable but instead allow it to slowly worsen the condition. Until when? You suddenly go deaf because you had an acoustic neuroma all this time?

If you could attribute you getting worse to something obvious then perhaps I'd agree, but being able to go to a concert is something a lot of us cannot do nor fathom without becoming permanently worse.

I'm curious if your distortions in sound still exist. Hyperacusis tends to get better regardless over time.

My money is on you've been lucky so far.

 

[Stephen Winkle]

Hey Steve! Steve here. I am a lifelong musician struggling with severe symptoms for seven months now. Your post, literally, brought tears to my eyes. Thank you for your wisdom, advice and hope. Lately, I believe, so... "God bless you!".

 

[GregCA]

Don't waste your time on finding out where it came from because: a) you will never find out, b) you'll be guessing and eventually hating yourself for things you did in the past!

That doesn't make sense to me. For one, it isn't true: I went down the diagnosis route and eventually found out where my tinnitus & hyperacusis came from. More importantly, had I not done that I would not have been able to take an early action and address the progression of my disease.

Keep in mind that tinnitus/hyperacusis isn't always linked to noise, and it also isn't always linked to "something you did in the past". I didn't do anything in the past to bring on Otosclerosis. Same for a lot of tinnitus sufferers (otitis, tympanoplasty/tympanostomy, various surgeries, Meniere's, hydrops, accidental acoustic trauma, etc).

I would actually encourage the opposite: if you don't know why you have tinnitus/hyperacusis, find out: some root causes are actually fixable! Others still benefit from early discovery (acoustic neuroma, for ex).

Good luck!

 

[Matchbox]

That doesn't make sense to me. For one, it isn't true: I went down the diagnosis route and eventually found out where my tinnitus & hyperacusis came from. More importantly, had I not done that I would not have been able to take an early action and address the progression of my disease.

Keep in mind that tinnitus/hyperacusis isn't always linked to noise, and it also isn't always linked to "something you did in the past". I didn't do anything in the past to bring on Otosclerosis. Same for a lot of tinnitus sufferers (otitis, tympanoplasty/tympanostomy, various surgeries, Meniere's, hydrops, accidental acoustic trauma, etc).

I would actually encourage the opposite: if you don't know why you have tinnitus/hyperacusis, find out: some root causes are actually fixable! Others still benefit from early discovery (acoustic neuroma, for ex).

Good luck!

Was your hearing still in the normal range when you got diagnosed? What was the smoking gun? Mastoid CT?

Do you have more sounds than ringing?

 

[GregCA]

Was your hearing still in the normal range when you got diagnosed? What was the smoking gun? Mastoid CT?

Do you have more sounds than ringing?

I had hearing loss when I first got (mis)diagnosed. The first audiograms did not show any air-bone gap, so they thought it was SNHL. They also ignored the fact I didn't have any stapedial reflex on one side. "It happens" I was told.

I did a CT, and it came out "all good".

Except that it wasn't and I decided to keep digging with other doctors on my dime (started going out of network, with no insurance coverage).

After half a dozen doctors, I finally found one that asked me to send him the CT images and not the radiologist's interpretation. He interpreted the images himself and found radiolucencies indicative of bone remodeling activity. I also did a hearing test in his facility, and the audiogram did show an air-bone gap there. That was enough data to point towards otosclerosis.

WRT sounds, pre-stapedotomy I would have ringing & roaring. I'd also have severe hyperacusis.

Post op I now "only" have high frequency ringing. No more hyperacusis, unless I apply force to certain muscles (like lifting heavy weights), or bend over a certain way.

 

[Matchbox]

I had hearing loss when I first got (mis)diagnosed. The first audiograms did not show any air-bone gap, so they thought it was SNHL. They also ignored the fact I didn't have any stapedial reflex on one side. "It happens" I was told.

I did a CT, and it came out "all good".

Except that it wasn't and I decided to keep digging with other doctors on my dime (started going out of network, with no insurance coverage).

After half a dozen doctors, I finally found one that asked me to send him the CT images and not the radiologist's interpretation. He interpreted the images himself and found radiolucencies indicative of bone remodeling activity. I also did a hearing test in his facility, and the audiogram did show an air-bone gap there. That was enough data to point towards otosclerosis.

WRT sounds, pre-stapedotomy I would have ringing & roaring. I'd also have severe hyperacusis.

Post op I now "only" have high frequency ringing. No more hyperacusis, unless I apply force to certain muscles (like lifting heavy weights), or bend over a certain way.

Mind describing the droning? Did you ever do the head tapping trick for it to go away pre-surgery?

Any example audiogram of your air bone gaps? That'd be helpful. Obviously interested as I don't know if I have hydrops or this in both ears.

My CT came out clean too, but yah perhaps I need the real photos to show an ENT.

 

[Athens]

Thank you for the positive post.

During your journey to improvement, did you feel that exposure to normal sounds throughout the day aggravated your hyperacusis and tinnitus?

This has been my experience and I wonder if I should be protecting myself more. I have had these issues for approximately one (1) year and the issues seem to be worsening rather than gradually improving. I read where the guitarist Jeff Beck wore sound generators for over two (2) years before he saw improvement in relation to his tinnitus. He seemed to indicate that he experienced improvement at exactly the 2.5 year mark. I wear sound generators but the sound from the generators and exposure to normal sounds seem to be aggravating my condition. This might be part of the road to recovery but it is frustrating.

 

[GoatSheep]

Hi fellow sufferers

I first had tinnitus in December 2016, with some hyperacusis. I got habituated to it pretty easily, and after 6 months it wasn't really an issue anymore.

Then, in January 2018, came the big hammer. Unbearable tinnitus set in, and my hyperacusis became so severe, that I couldn't do anything anymore. No bars, no restaurants, no music, no TV, my 4-year-old daughter talking to me made my head explode. I got severely depressed, was home sick for 8 months, lost 25 kilos. I slept 1 to 2 hours a night for almost 3 months. I thought my life was over. I took antidepressants and Xanax, which I know some people are not that fond of, but they definitely helped me get through the darkest days.

After a couple of months it took to get my head around it I started fighting back. I found a great psychotherapist who is specialized in tinnitus cases, who immediately reassured me that hyperacusis can always go away or get better, whatever the reason of the onset. If she's right or wrong, I don't know, but I believed her and that helped me a lot.

ENTs of course could not help me, and I quickly started giving up consulting them. One day I said enough of this. I started going for a drink here and there again. It was really tough, sometimes I left after 10 minutes. I got custom made hearing protection that takes away 20 dB, that helped a lot. The tinnitus perception when you wear them of course is louder, that is not easy to bear, and god mine was loud, I heard it screaming when I was driving my car 150km/h on the highway. I started going to restaurants again. It was tough, I won't deny that, but you need to get going. I'm a metal aficionado. 8 months after the hyperacusis onset I went to my first concert. Life had to come back. Man was I frightened, but I put on my hearing protection, stood at the very back of the room, and had a great evening in the end.

Step by step life came back. My hyperacusis got better, but it was still a major pain in the ass. So was tinnitus. I had some great day here and there where tinnitus was barely noticeable, with very low hyperacusis, just to wake up the next day in hell, and it lasted weeks sometimes, before the next good day.

9 month after onset I went back to work. I started living a healthier lifestyle too. Better food, almost no alcohol, not because I think alcohol makes tinnitus worse, but because you need a clean head to fight back. I go to the sauna and swimming twice a week. I spend time in the nature, I focus on the really important things in life. I focus more on what my needs are, I learned to say no. I still drink a shitload of coffee though, no way in this world am I gonna switch to tea

3 & 1/2 years later, I'm sitting here, I still have tinnitus, but it isn't that much of an issue anymore. Hyperacusis got better to the point that a month ago I went to the fireworks with my now 8-year-old daughter. I had my hearing protection with me, but I didn't really need it, I put it on after 2 minutes just to be on the safe side, but I could have done without. I have bad days here and there, then I put headphones on and listen to "Cicadas" on the ReSound Tinnitus Relief app which imho is amazing. This is not some bullshit advertising, apparently there are in-app purchases there, but the basic app comes with everything I need and you probably too. I even use it on great ear days sometimes just to relax. This app really helped me a lot. What helped me a lot too during really tough hyperacusis days were a pair of in ear Bluetooth headphones with hear through function (I own the Jabra 85t Elite but plenty of other choices out there). If you're in a noisy environment you can decide how much volume you want to let through, while listening to any kind of white noise simultaneously if you feel the need to do so.

As I'm writing this article I have my headphones on and listen to some solid heavy metal of course not on nosebleed volume!

What I want to tell you all is never give up, do not let people tell you that this is permanent, do not let people tell you to stay away from any loud noise permanently. You will end up in isolation, you will become miserable and depressed. Protect your hearing when needed and live your best life, there will be ups and downs, but there will be most probably more and more better days around the corner. It's not an easy journey. Go out though, do what you love.

And when I say protect your hearing, I mean protect when there's a high dB level that can really hurt your hearing. Don't get paranoid, or run around measuring dB's nonstop. I did that, it's utter bullshit. You're common sense tells you what is too loud.

I learned so much about myself through this up and down journey, and you know what, I can say with confidence, that I am a happier and better person now. If somebody would say today ,"I'll take away your tinnitus & hyperacusis in 3 seconds! OK?" I'll say yes without hesitation. If somebody though would say "I'll take away your tinnitus & hyperacusis in 3 seconds! OK?, but you'll become the person you were before" it would probably after some hesitation be a no.

Sounds strange I know but that's the way I feel about it. A lot of good in the bad for me there was actually.

I now live what I consider a normal life, I mostly have good ear days. I have shitty days here and there, but I don't give a flying fuck anymore, because I learned how to deal with it and because I know better days will always be around the corner, and because I'm absolutely convinced that it will get better and better over time.

Don't give up and don't listen to negative people and some of the charlatans on this site, and man there are a lot of them.

I wanted to keep this short, but it seems that didn't work out well

Feel free to ask questions, if you have some, I'll come back to you 100 %, I'll be more then happy to help.

Steve

Congratulations on your major improvement!

Did you get ear pain from noise, or did you just have loudness hyperacusis?