Friend's Spontaneous Tinnitus Recovery After a Couple of Years

[Guywithapug]

Hi Guywithapug, it's good to hear from you. I'm having an ok day today which I will happily take. I woke up in complete silence but after an hour of being up and about my tinnitus came back like normal. Last night I had a spike that brought me to my knees so the shocking silence was welcome, even if it lasted an hour.

I went for a walk today and tried to enjoy it like I normally would... but the cicada sounds in the wind in the trees broke me into tears. I miss peace and feeling grounded.

I haven't done any yoga or meditation since December... I'm just too depressed and heartbroken. I hear totally you. It's so challenging to mediate with the noise happening. I am so incredibly amazed at your outlook and that you still show up to meditate despite the challenges.

How have you been holding up? I was reading through your story and I couldn't even imagine having to face what you've bravely gone through.

Oh gee, sorry to hear about the spike, those are so terrible. I'm glad you had an ok day though, I also miss the peace and serenity that I used to have. I try and not let it bug me too much though, as I am sure I will enjoy it once again when my brain has fully adapted to this misery.

Thank you for your kind words about my journey, I never would have thought this would have happened to me but I just keep positive and moving forward. I know there will be a treatment for us all one day, I just know it!

 

[shelbynn]

Oh gee, sorry to hear about the spike, those are so terrible. I'm glad you had an ok day though, I also miss the peace and serenity that I used to have. I try and not let it bug me too much though, as I am sure I will enjoy it once again when my brain has fully adapted to this misery.

Thank you for your kind words about my journey, I never would have thought this would have happened to me but I just keep positive and moving forward. I know there will be a treatment for us all one day, I just know it!

And your brain and my brain will adapt to this as well! We will find peace in the new noises. Our brains are powerful af.

I don't think anyone imagines that something like horrible health conditions will happen to them. I know I certainly didn't think anything like this would happen to me either. And I hope you're right. It's the only reason I haven't ended it all already. Let's keep our fingers crossed for better days!

 

[Forever hopeful]

@shelbynn,

Fellow social worker here. Although I haven't been in practice in over 20+ years. Switched careers quite a while ago.

I hope you're doing OK. I feel for your struggle and I was there in 2015. I got bilateral tinnitus after attending an AC/DC concert. Similar to your friend, mine went away after about two years. My process was the same as hers. I was using sound machines, medication to sleep etc. I used to carry a sound machine around with me in the office when I had to go to meetings. My hearing at the time was perfectly normal. I eventually learned to deal with it and cope and then I stopped using sound machines, stopped using my sound pillow and noticed it was gone.

I'm back on this site because I had some hearing loss in my left ear last May and my tinnitus came back in that ear. Ugh! Of course, I went through it all over again as if I had never had it in the first place. It was just like 2015 again. And I just sobbed and sobbed to my ENT because I did everything right. After I first got tinnitus, I got custom-made earplugs, I protected my ears, I did everything right. I did everything I was supposed to do. But I habituated to it pretty quickly. Until two weeks ago when it got worse, changed tone, pitch etc. and is soooooo much more annoying, and I learned I have more hearing loss in that ear. Now I'm headed for the million dollar work up to make sure the etiology is not the dreaded acoustic neuroma or something else. Best case scenario, it's cumulative damage of years of going to concerts and not realizing I needed to protect my ears. Oh and I think there are at least three occurrences when the burglar alarm went off in my office in my early 20s.

So it is a process, but my point is that I am confident that you are going to get better. And it may in fact go away.

I'm assuming you have no measurable hearing loss? The key is to take it one day at a time. Just like you are doing.

Going through this a third time for myself, the best I can do is one day at a time.

And for the record, I cannot believe that doctor told you tinnitus isn't a problem. How fortunate is he that he clearly doesn't suffer from it. I too cried to my ENT and asked why there's no treatment or cure for tinnitus. His response was that because it doesn't technically kill you, there is not a lot of research dollars being funneled into it. He was very kind about it and he was very understanding. He also went on to say that since the problem is really primarily neurological and multifactorial, targeting treatments has been a massive challenge. Well I certainly understood the complexity of the issue from a neurological perspective, it didn't make me feel any better.

Hang in there. One day at a time. This past week I had two massive spikes in the middle of the night so I know what you're talking about. Sent me into a tailspin like you wouldn't believe. Both times I seemed to be better by the morning.

Best,
Danielle

 

[shelbynn]

@shelbynn,

Fellow social worker here. Although I haven't been in practice in over 20+ years. Switched careers quite a while ago.

I hope you're doing OK. I feel for your struggle and I was there in 2015. I got bilateral tinnitus after attending an AC/DC concert. Similar to your friend, mine went away after about two years. My process was the same as hers. I was using sound machines, medication to sleep etc. I used to carry a sound machine around with me in the office when I had to go to meetings. My hearing at the time was perfectly normal. I eventually learned to deal with it and cope and then I stopped using sound machines, stopped using my sound pillow and noticed it was gone.

I'm back on this site because I had some hearing loss in my left ear last May and my tinnitus came back in that ear. Ugh! Of course, I went through it all over again as if I had never had it in the first place. It was just like 2015 again. And I just sobbed and sobbed to my ENT because I did everything right. After I first got tinnitus, I got custom-made earplugs, I protected my ears, I did everything right. I did everything I was supposed to do. But I habituated to it pretty quickly. Until two weeks ago when it got worse, changed tone, pitch etc. and is soooooo much more annoying, and I learned I have more hearing loss in that ear. Now I'm headed for the million dollar work up to make sure the etiology is not the dreaded acoustic neuroma or something else. Best case scenario, it's cumulative damage of years of going to concerts and not realizing I needed to protect my ears. Oh and I think there are at least three occurrences when the burglar alarm went off in my office in my early 20s.

So it is a process, but my point is that I am confident that you are going to get better. And it may in fact go away.

I'm assuming you have no measurable hearing loss? The key is to take it one day at a time. Just like you are doing.

Going through this a third time for myself, the best I can do is one day at a time.

And for the record, I cannot believe that doctor told you tinnitus isn't a problem. How fortunate is he that he clearly doesn't suffer from it. I too cried to my ENT and asked why there's no treatment or cure for tinnitus. His response was that because it doesn't technically kill you, there is not a lot of research dollars being funneled into it. He was very kind about it and he was very understanding. He also went on to say that since the problem is really primarily neurological and multifactorial, targeting treatments has been a massive challenge. Well I certainly understood the complexity of the issue from a neurological perspective, it didn't make me feel any better.

Hang in there. One day at a time. This past week I had two massive spikes in the middle of the night so I know what you're talking about. Sent me into a tailspin like you wouldn't believe. Both times I seemed to be better by the morning.

Best,
Danielle

Hi Danielle,

Thank you so much for your kind words. I found this message to be incredibly comforting. It's nice to know that I'm not alone and not crazy for being so upset by all of this. I'm so sorry to hear after your initial recovery you had another bout of tinnitus, this time seeming for the worse. I hope your test results come back with all good news!

I have had 2 audiograms now and both are "perfectly normal" although my hearing isn't. I really am trying to take it one day at a time. I hope I can find the joy of listening to nature again or my favorite music again someday.

 

[AliasM]

I just want to say Shelbynn that I can totally relate. I had a spike last night that was shocking and unbearable. I was all alone. My husband is away at a funeral. His best friend took his own life last week. I posted here on TT, begging for some advice, even just some company, someone to talk to. I kept hitting refresh and no one replied. I am having such a rough time with T (December 2020) & H (January 2021). Sorry I can offer no advice. I am in the absolute thick of it as wel. I just want you to know we are at the same place and you are not alone.

 

[Forever hopeful]

@AliasM, the middle of the night spikes of the worst. I never had those before either. In fact I never had spikes before.

Do you take anything to help you sleep? I do but I have to confess it hasn't been working much lately, but I am also on a prednisone taper and that causes sleeplessness.

And it's awful to be alone. I am in the US and I see you are in Australia so we're in completely different time zones but you can always inbox me. I do check it quite frequently.

Tinnitus is at its worst when it's new. I have gone through this twice before and now going through it for a third time, I can tell you that for me it has always gotten better. It doesn't mean that the noise went away it just meant that I got used to it. And I'm not going to lie, I do a ton of masking and slowly, slowly, slowly exposing myself to the noise for brief periods of time gradually increasing my exposure over months and months.

I hope your husband comes home soon and you get some relief.

Danielle

 

[Ciara1987]

Is there a sure fire way to know if tinnitus is from noise exposure? Any certain symptoms?

 

[Rb86]

Is there a sure fire way to know if tinnitus is from noise exposure? Any certain symptoms?

I can't declare it a surefire way, but mine is from noise and I had a pretty bad sensation of a clogged ear right after.

 

[shelbynn]

Update on my condition:

It still fluctuates quite dramatically between days and even hours. I still hear electric cicadas in white noise like the faucet/fan/microwave etc... the reactive morse code beeping for the most part is gone (after one month thank GOD). Most of my favorite songs still sound empty/distorted. My super high pitched hissing tinnitus has quieted for the most part but the single tone wine glass sound that is a lower pitched tinnitus in my right ear remains. I have had 2 completely normal audiograms and have been now on 2 courses of steroids.

Edit: I forgot to include this but I'm still struggling with mild/moderate hyperacusis, especially in the evenings. I have also been diagnosed with TTTS.

My new doctor is considering a diuretic but he wants an MRI and for me to get a COVID-19 antibody test first as I'm having other symptoms like issues with memory and cognition as well as mild tremors in my non dominant hand.