Tinnitus Absolutely Does Get Better — Most People Just Don't Come Back to Tell About It!

Discussion in 'Support' started by Adam Reynolds, Jul 11, 2022.

    1. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      It's something I'd say was crazy to try if I didn't have tinnitus. Just sharing what I did. Can't say that it works.
       
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    2. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      The Combo Mini. It had like 4 colors, some IR.
       
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    3. Stuart-T
      Thinking

      Stuart-T Member Benefactor

      Tinnitus Since:
      02/2022
      Cause of Tinnitus:
      Ear wax or COVID-19 infection
      I think it is probably true that most people whose tinnitus gets better do not come back to tell about it.

      YES.

      But I also believe most people who get worse or don't get better also don't come back to tell about it.

      The conclusion:
      • Tinnitus can get better
      • Tinnitus can get worse
      • Tinnitus can stay the same
      There may be some statistics to break down the above in % terms etc. I would be interested if anyone knows of such a study.
       
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    4. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      A couple of years ago we ran a survey targeting people (i.e. we emailed them) who had not visited Tinnitus Talk in two months or more. We received 2814 responses. There were many more questions than this, but the below is the part that might interest you. Of course, even this does not capture it perfectly. Should we have made the duration longer, 6 months, 12 months? And maybe a chunk of those who did feel better, and got better, didn't bother responding, skewing the results further. It's not really a topic many want to spend time on after it no longer rules your life.

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    5. UKBloke
      No Mood

      UKBloke Member Benefactor Hall of Fame

      Tinnitus Since:
      1991
      Cause of Tinnitus:
      Loud Music / family history
      I think two months was probably too soon. Two years I think is a good timeline with this. 2814 responses is excellent though.
       
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    6. Stuart-T
      Thinking

      Stuart-T Member Benefactor

      Tinnitus Since:
      02/2022
      Cause of Tinnitus:
      Ear wax or COVID-19 infection
      As I thought - about 50% no difference.

      And about the same who had improvement and who had worsening, but some good evidence of habituation.

      I don't see any reason to presume that those who improved were any more less likely to respond than those who got worse. Those who got worse may have been too depressed to respond. If anything, the former - in their positive joy - would want to reply.

      Thanks for posting that.
       
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    7. bobvann
      Ape-like

      bobvann Member

      Location:
      Inside the vortex
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Loud shit
      I remember communicating with you when I tried playing guitar to distract from my drum playing induced tinnitus. I think you said you were doing the opposite.

      I tried playing electrical drums again, unfortunately it now messed up my right ear, resulting in ear fullness and crackling which was not there before. This was using custom earplugs and volume controlled speakers. This proves to me that perhaps for some of us it's not just a psychological issue.

      I am going to my GP to have my ear checked out since they are physical reactions.
       
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    8. ploughna

      ploughna Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      motor racing and power tools
      Michael - apologies for not responding sooner. Thanks for your detailed rely - this is helpful.

      Paul
       
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    9. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      04/1996
      Cause of Tinnitus:
      Noise induced
      No problem Paul, take care.
       
    10. TWK

      TWK Member

      Location:
      Toronto
      Tinnitus Since:
      01/2018
      Cause of Tinnitus:
      Virus
      Thought I'd check in on Tinnitus Talk today because I've had absolutely no tinnitus today (so far). I first got severe tinnitus almost 5 years ago from a viral infection. It was so bad that it was blasting above the shower. It could not be masked. Also had pretty severe hyperacusis to go with it - silverware clanking in the kitchen was excruciatingly painful, as was certain people's voices. My limbic system was already pretty sensitive prior to tinnitus, but when the tinnitus started, it went into crazy mode - I developed severe sleep maintenance insomnia, I'd have tremors, especially when waking, and a lot of other signs of severe hyper-activation of stress responses. There were times where I had the, familiar to many of you, "I'm pulling the plug if this doesn't go away" thoughts. It was not a good time to put it mildly.

      Somehow I got myself through to the other side. The tinnitus intensity went down a fair bit in the first year (maybe 50%), but then stayed the same - still very noticeable. It also took about 1.5-2 years for the hyperacusis to subside, although I still get a mild bout of it now and then. I eventually largely habituated to the point where I'd go a whole day without noticing the tinnitus - that took about 3.5-4 years. Some days were worse than others - I'd have unexplained spikes, but they'd always eventually subside. This last year has been pretty good - my sleep is finally almost fully back on track (I get 6.5-7 straight hours a night), I'm very productive at work, I'm not stressed with my family members because of the sound or lack of sleep, and physically I feel much better. Recently, I started having whole days without much tinnitus present at all - I actually notice those days more than the days with tinnitus! It does always come back, but the temporary 'holidays' from tinnitus are nice.

      Things that helped me - I got back into healthy modes, including: better eating, exercise every day (a lot of cycling), a bit of meditation, cut out the drinking, minimal caffeine, regular hours for sleep, strategies to deal with stress, and importantly I, learned how to accept and ignore the tinnitus/and not dwell on it, and I stopped visiting the Tinnitus Talk forums (this helped a lot with learning to not think about tinnitus). I look after my hearing in reasonable ways now too, like no earphones, and likely no more concerts, not that I went to many. I also learned to not over protect my ears - that isn't healthy either.

      My tinnitus may not ever fully go away, but I'm in so much of a better place now that it may not matter much. Not everyone will have the same trajectory with tinnitus, but hopefully many of you can get there.
       
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    11. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      I definitely avoided it for a bit... I'm glad to have started playing again.

      I never said it was psychological or that I am anything more than 1 person.

      I know my outcome isn't always the case. My point is that people who get better, leave forums, so people shouldn't project their prognosis on who stays.

      I feel for everyone stuck in it. It sucks. And it's real.
       
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    12. MadeleineHope
      Inspired

      MadeleineHope Member

      Tinnitus Since:
      10/2022
      Cause of Tinnitus:
      Acoustic shock/noise-induced
      Hey @Tom Cnyc,

      Thanks so much for sharing your recovery story here! It's been a real source of hope for me, & I've returned to re-read your posts many times!

      I'm about 7.5 months into my hyperacusis & tinnitus journey, & recently I've developed a new, frightening symptom - facial numbness. I haven't lost all feeling, but there is still some numbness there & my face feels really tight. Can you share more about your experience with this symptom? Did you ever experience it for a prolonged period of time, or was it an on-and-off again thing for you, closely tied to sound exposure? And how long did it take for this to resolve for you?

      Thanks!
      Maddy

      P.S. How are you doing these days?
       
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    13. Óscar PP
      Psychedelic

      Óscar PP Member

      Tinnitus Since:
      Nov 2020
      Cause of Tinnitus:
      Coronavirus
      Yeah, this is true for most. Mine didn't really get better, I just adapted to it with time (6-8 months).
       
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    14. Juliane
      Heartbroken

      Juliane Member Hall of Fame

      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Noise /acoustic trauma
      I am in the same boat. No improvement, no habituation. Only despair.
       
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    15. momus

      momus Member

      Tinnitus Since:
      01/1998
      Cause of Tinnitus:
      antibiotics
      That may be true (or not), but there is no way to know because the people who have left the forum are not here to respond as to why they have left. Only they can answer it, and they ain't here.

      My tinnitus is what it is. It has gone down and up over the course of 2+ decades, so I don't mention it because it fluctuates. Plus, we all know that talking about it only draws attention to it, which only makes the perception of it worse. I went to a couple of in-person support groups in Portland when I first got tinnitus... never again! That was not helpful at all.
       
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    16. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      I know many people who had dramatic improvements and I am one. Not everyone who leaves gets better, but most who get better leave.
       
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    17. ZFire
      Pacman

      ZFire Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      Hey @Tom Cnyc, I was wondering if you’re still living in NYC? Do you find the city obnoxiously loud too? I’m a New Yorker too.
       
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    18. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      I moved to Essex county. I still have to commute 2x a week to the city. Yes, I hate how loud the city is. I'm pretty open with friends and coworkers about what I went through years ago (they see me wear musician's earplugs in loud bars and on the train etc) and I've had many ask me where I got them because even without having tinnitus, they're bothered by the noise also.

      Ever been on the 6 line at Union Square where the metal railing expands to fill the platform void? Years of commuting in that station with that screech - I'm convinced caused more damage than my concert habits. Everyone should wear earplugs there.

      Before moving to NJ, I lived in Queens (Long Island City). It's not quite as loud as Manhattan, but it is dramatically easier on the ears in the suburbs, and it's a better and less expensive life out here if you're considering moving. Do it for more reasons than tinnitus.
       
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    19. ZFire
      Pacman

      ZFire Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2012 (mild) & 04/2021 (severe)
      Cause of Tinnitus:
      Ototoxicity (2012) Unknown-likely noise induce (2021)
      Thanks for sharing. I’m planning on moving to New Jersey sometime in the future as well, once I have money to do so. My goal is to find some co-op or condo apartment either in Fort Lee, Edgewater, Fairview, or Cliffside. I enjoy those areas a lot. I have lived in Manhattan, NY since birth. I want out now. Too much noise and the city is sinking with this mayor.

      Stay safe out there.
       
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    20. Tom Cnyc

      Tom Cnyc Member

      Location:
      NYC
      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Warehouse event after years of enjoying music.
      You're staying pretty urban in those areas, but you'll def be happier. I planned to move to Weehawken before exploring further out... Honestly, take a look, you may be surprised how much more you get for your money just adding 15 minutes to a commute. Just watch out for plane lines because Teterboro creates some noise pollution.
       
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    21. Mattv
      Busy

      Mattv Member

      Location:
      San Diego
      Tinnitus Since:
      September 2017
      Cause of Tinnitus:
      unknown
      Don’t worry about comments like this. This is why I rarely come to Tinnitus Talk. A lot of people want to diminish your perception or difficulties with tinnitus because theirs is far worse.

      I too have had very loud, intrusive tinnitus since 2016. At first it was horrible, but over time, I just don’t care about it. I still hear it as loud every day. For me (and I suspect many others) my tinnitus is very much related to anxiety and stress. If I go to my off grid cabin for a few days and mediate, it sometimes gets much better. Because I can have rare days of almost silence, I have hope it might subside.

      Many of the people I know who suffer from clinical depression and anxiety (I do not) also have tinnitus. People with mental health issues seem to have the hardest time with getting used to tinnitus.
       
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    22. Binnen-dahlia

      Binnen-dahlia Member

      Tinnitus Since:
      05/2023
      Cause of Tinnitus:
      Unknown
      It's nice to hear good stories. It does scare me to hear that tinnitus can become louder over the years. I mean it's already so loud. :(

      Does anyone have some tips on how to habituate?
       
    23. RunningMan
      Stressed

      RunningMan Member

      Location:
      USA
      Tinnitus Since:
      HiFrq ~2000, Increased 2022, LoFrq ~2020
      Cause of Tinnitus:
      Loud noise - clubs, stereos, cycles, headphones, engines,etc
      I've read that from various people. It's interesting because I have had extreme anxiety at times and very low other times, and my tinnitus intensity has no correlation to that. Same thing with lack of sleep or differences in diet - the tinnitus just does what it does.
      Wow, I can't imagine having "almost silence" in quite a while, but especially these last 18 months. I can hear my tinnitus over pretty much everything all the time except the shower. I would love to experience something close to silence once in a while.
      I've seen quite a bit of feedback from people who never had the slightest depression until after getting bad tinnitus. It's turned their lives upside down. Mild tinnitus would probably not have been an issue for most of them since that can be more easily habituated to, which is pretty much impossible with loud variable multiple tone/sound tinnitus.

      Anyway, as far as the thread and tinnitus absolutely getting better, in over 20 years, my tinnitus has only gotten considerably worse, and in that time, I can add additional hearing loss, ETD spontaneous clicking, TTTS/MEM, hyperacusis, and insomnia to the mix.
       
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    24. Mattv
      Busy

      Mattv Member

      Location:
      San Diego
      Tinnitus Since:
      September 2017
      Cause of Tinnitus:
      unknown
      I’m so sorry you are suffering. I totally understand. My tinnitus came on during a period of intense work anxiety. I have worked very hard to reduce my stress. Even if it’s not helping my tinnitus, it helps me deal with it better..
       
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    25. gameover

      gameover Member Benefactor Hall of Fame

      Location:
      USA
      Tinnitus Since:
      01/2023
      Cause of Tinnitus:
      Noise+sinus
      Can confirm. No depression ever. Maybe handful of times in life when I'd be down for a few days, but I am literally talking days. Life was too exciting to stay down and I always found something to look towards. And things always turned out good. This time I just cannot get up. I had a slight improvement for a couple of weeks recently, but am down again.
       
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    26. SilverFox
      Insomnious

      SilverFox Member Benefactor

      Location:
      Europe
      Tinnitus Since:
      03/2023
      Cause of Tinnitus:
      Common cold
      I, too, am this case. Never had anything even remotely close to depression or anxiety. I could imagine getting used to constant quiet tinnitus. This stuff? It kills you from the inside.
       
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    27. BobDigi
      Kick ass

      BobDigi Member

      Location:
      UK
      Tinnitus Since:
      5.6.14
      Cause of Tinnitus:
      Loud noise
      Everyone can cope with tinnitus better over time, but like everything in life, it depends on how strong your mindset is and how much you're willing to try.
       
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    28. gameover

      gameover Member Benefactor Hall of Fame

      Location:
      USA
      Tinnitus Since:
      01/2023
      Cause of Tinnitus:
      Noise+sinus
      Correction: "...it depends on how strong your mindset and how bad your condition is."

      There are levels of tinnitus and especially hyperacusis where no mind can match them.
       
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    29. Utdmad89
      Depressed

      Utdmad89 Member

      Location:
      United Kingdom
      Tinnitus Since:
      2018
      Cause of Tinnitus:
      Not sure
      There are lots of people with loud tinnitus that learn to cope. Maybe not with bad hyperacusis.
       
    30. gameover

      gameover Member Benefactor Hall of Fame

      Location:
      USA
      Tinnitus Since:
      01/2023
      Cause of Tinnitus:
      Noise+sinus
      I can agree. I am increasingly better at coping with my loud/severe tinnitus, but I am unable to overcome my hyperacusis, which perhaps is still moderate (mostly loudness only).
       
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