• Jordan_U@lemmy.ml
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    1 year ago

    This is not advice, because if I had heard this posted as advice in my first year or two of tinitus I would have been pissed at the person giving it. Also, to a very large degree even your emotional reaction to this is not something you can control.

    I was absolutely devastated and hated myself when I got tinitus. I and a co-worker teaching international folk dance were invited to a dance party / concert.

    Amazing band, flown in from another continent, but I knew it would be too loud. I’ve always had minor hyperacusis and been very concerned about protecting my hearing. Before the party started I offered disposable earplugs to my co-worker, she declined. I had my own pair, in my pocket, the entire night. For some reason I never put them on.

    At the end of the night I leave the venue and have terrible ringing in my ears. I freaked the fuck out, and kept everything as quiet as possible for the rest of the night and the next day to try to allow my ears to heal. Immense guilt and kicking myself. And fear.

    The ringing never stopped. Saw an audiologist, who said it would definitely go away in a few weeks. It did not.

    Tried supplements that did seem to reduce the volume of the ringing (Lipoflavinoid. No idea if it was all placebo or not).

    Saw many more specialists and eventually met one (more than a year later) that told me (no idea if current studies back this up) that sometimes Tinitus is not physical damage at all, and that it’s damage in the way that our brains process the input from our ears.

    He recommended that I “try not to think about it”. Said that sometimes even helps the ringing decrease. I told him that I was not the type of person who could ever not think about it. Nor did I want to be. Exactly the opposite, I had pledged to myself to never just not notice it. Saying that now doesn’t really make sense to me, but at the time it absolutely did. It was an integral part of my self-image.

    So, I religiously took Lipoflavinoid every day for more than a year. Normally with my ADHD I would struggle with that, but every time I forgot it I would notice the ringing getting louder and remember.

    Then, maybe two or three years in I would sometimes forget to take Lipoflavinoid and… Not notice. I still hadn’t heard a second of silence for 3 years, but I didn’t notice the volume increase.

    Eventually I was forgetting it more often than not and didn’t want to keep the hassle and pay for it so I just stopped.

    Work got difficult and I would have other things to think about than the ringing, and every one in a while there were days where at the end of the day I would realize I hadn’t noticed the ringing at all. (If I had that realization in a quiet room, I’d immediately start noticing it again)

    I gave up trying to fix it. I managed to convince myself that accepting it did not go against the fiber of my self concept, and my experience got better.

    It’s been more than 10 years since that concert and I can say that I haven’t been bothered by the ringing in years, and I’m in a relatively quiet room typing this out now and don’t hear it.

    Again, not advice. I can’t tell you to “just ignore it”, and if you’re like me you can’t make yourself do that even if you wanted.

    If you’re early in your experience with tinitus, maybe it will be helpful to hear that at least for one person, it got better. And that by “it” I mostly mean my experience of life with tinitus, moreso than the ringing itself “going away”.

    If anyone has read this far, fun fact that kind of goes against the general gist of this narrative:

    Once I had tinitus I realized that I could be a surprisingly accurate and precise human drcibal meter by comparing perceived volume of my ringing to perceived volume of the environment.

    Could get within about 3db in the range from 40 to 75 without earplugs, at which point I would put in earplugs and know how much to adjust to get the same precision up to 100db.

    I generally refuse on moral grounds to participate in activities above 95db without all participants strictly being required to use ear protection.

    Anything above 80, I set up a small table with free earplugs, even if I’m not the organizer…

    Also, I haven’t really tried to measure db this way in a few years. Don’t know if I still can or not.

    • WittyProfileName2 [she/her]@hexbear.net
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      1 year ago

      For what it’s worth, I do find this somewhat reassuring.

      I don’t know if I’ll ever get to where you are, but to hear that it could get better does make me feel a little less shitty.

      Thank you.