Struggling with Hyperacusis/Tinnitus for Close to 2 Years, No End in Sight

Discussion in 'Support' started by Srebint, Apr 21, 2018.

    1. Srebint

      Srebint Member

      Tinnitus Since:
      August 2016 (hyperacusis)
      Cause of Tinnitus:
      Excessive listening to intense music with high-end equipment
      I've posted my experiences on this board before, and I've posted about my recent experiences on another board, but not much has changed since I wrote what I last wrote. I made concentrated efforts to avoid using speakers and most artificial audio at home, and scheduled an appointment at the Mass Eye and Ear infirmary for earlier this month. It was hellish getting to and from there, and not much came of my appointment. The doctor I met recommended musician's ear plugs, which were almost $200 and covered under no insurance, and I didn't feel were necessary. He also mentioned the possibility of medication, and asked if I was willing to go on some that could cause seizures (definitely not.)

      That was 2 weeks ago, and I've gotten little to no response from him. He's been largely out on vacation or other conferences (which he never informed me of); all he's really done since is recommend sleep medication (because I admittedly do have very abnormal sleep patterns I've developed, and I do agree they somewhat contribute to this) to my PCP, which I declined because despite my sleep issues, what I was recommended didn't seem terribly safe, and it's mea He's been remarkably flippant and unresponsive beyond that. I have wanted to reconsider musician's earplugs though, since I've found myself overly sensitized even when I do wear protection for things like driving, showering, the gym etc. I tried wearing foam earplugs for one of the first times while showering last night, and while it did seem to work remarkably well, not long after I got out, my H/T increased to a degree it never has when wearing protection during a risky activity. It was comparable to what I experienced when my "temporary" threshold increase first manifested and I tried wearing plastic earplugs. It seemed to variously contain my tinnitus too much, and sensitized me from the vibrations of external sounds.

      And as I lay in bed, it just kept hitting me how bad this has been. Although my day to day life isn't much of a struggle with this, it's enough, and it's really gotten to me how I've been unable to handle speakers, headphones etc. at all like I used to. This has ultimately been a genuine impediment to my life, and I have no idea what to do. Most of the specialists I've seen so far have been no help; the first one I saw didn't even bother to tell me the name of my condition and gave me the impression it would just be a few months or so, the other has barely responded to me at all. Just about everything I've tried has made things worse- the self-therapy, wearing more "extensive" protection. I seem to keep going through the same exact phases of tolerance and exacerbation over and over again. I avoided listening to speakers or headphones at all for a month or so, then I go back in some small way, and that coupled with other triggers puts me back to where I used to be. I have no idea what musician's headphones will do for me because of my experiences with plastic earplugs and what happened last night. I expect nothing of things like white noise generators (which I've been repeatedly recommended) because all of my attempts with such things make my condition worse. I have no idea what my prognosis is and when this is going to go away (especially the "temporary" threshold increase- I've had that for 6 damn months now), and what this will have done to my hearing.

      The only silver lining to this is that I've taken four hearing tests so far, and each of them has shown my hearing to be very good. I pick up on the low-pitch/volume noises used remarkably well. There was some indication of the beginnings of slight hearing lost during my first test in August 2016, but that doesn't seem to have been brought up any further.

      I'm just at a loss at what to do next. I've been told that specialist did get my messages and he will (hopefully) get back to me early next week with something more specialized, and I have scheduled an appointment at another center in Worcester early next month, but beyond that, I really have no idea what's going to happen. I've also been getting told of upcoming studies for the past 2 months now that should be coming up at Mass Eye and Ear, but nothing has ever materialized.

      What gets me also is that I really thought this would be 2 years maximum- that seems to be the general trend. I clearly had a minor case for the first year and 2 months. Then came my threshold increase. And through that, I still seem for the most part minor. Now it's going on 2 years and there's no end in sight. I just have absolutely no idea what to do next.
       
      • Hug Hug x 2
    2. Bobby B
      Fine

      Bobby B Member Benefactor

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      Large caliber rifles&machine guns, +30 years of loud clubs
      For H due to noise you may want to try LLLT
      Also, chondroitin supplement has helped me I take 3g total a day in split doses over the day
       
    3. AUTHOR
      AUTHOR
      Srebint

      Srebint Member

      Tinnitus Since:
      August 2016 (hyperacusis)
      Cause of Tinnitus:
      Excessive listening to intense music with high-end equipment
      Low level laser therapy, that's a new one. Seems to be something that a specialist must administer though. How might I be able to go about finding one who offers such therapy?

      I could say more later, but regarding diet, I have decided to refrain from coffee/caffeine altogether, as I've learned that does inflame tinnitus, and I've been drinking coffee often (usually 2 cups a day, sometimes even 4) pretty much ever since I got my hyperacusis. But this was before the threshold increase in October, and before that, the tinnitus was pretty minor and for months ended up as something I'd experience about once a week or less.
       
    4. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      It's not new at all. There's a pretty comprehensive thread on here about LLLT.

      Quite a few people use "home devices", some that were purchased as medical equipment, others that were built as a "do it yourself" project.

      The thread in this forum + Google can provide you with many leads, in particular related to your location. Dr Wilden is a common practitioner.
      As far as I know, there is no scientific study that demonstrated efficacy of the treatment yet.
       
    5. AUTHOR
      AUTHOR
      Srebint

      Srebint Member

      Tinnitus Since:
      August 2016 (hyperacusis)
      Cause of Tinnitus:
      Excessive listening to intense music with high-end equipment
      I meant new in the sense of I've never seen that suggested before. But I will look into it.
       
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