What in the World Is This? An Atypical Case of Hyperacusis

Discussion in 'Support' started by Zugzug, Aug 5, 2019.

    1. Zugzug

      Zugzug Member Podcast Patron Benefactor Hall of Fame

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Autoimmune hyperacusis from Sjogren's Syndrome
      Hi all,

      I am new here; I want to first pay my respects to those of you who have been suffering for years. Anyways, given how rare these problems are, I was hoping that I could connect with someone else's story.

      Exactly 10 weeks ago, I developed dizziness. By dizziness, I mean chronic imbalance. No episodes, and only noticeable with movement. But it was quite bad in the sense that you can't chalk it up to an anxious afternoon or whatever - and completely constant. It also wasn't affected by noise levels or anything; again, no episodal aspect. At the beginning, I developed tinnitus and very, very minor hyperacusis in both ears. At this point, the hyperacusis was so minor that I only noticed it when talking on the phone. Since I had bad dizziness, I didn't even bother taking it seriously. Didn't google it or worry about it, etc.

      Anyways, the weeks go by and the imbalance slowly improves. To this day, it is probably 90% improved from when it was at its worst. Unfortunately, the hyperacusis got much worse. Right now, it is so bad that I sit with my ears plugged; even the sound of my keyboard makes me anxious. Every little noise angers me and causes intense panic. I frequently wake up in the night (with ear plugs in) shaking and clammy just because the ceiling fan made a tiny noise.

      However, there is minimal raw pain. Upon exposure, typically I get loud tinnitus and a super emotionally distraught feeling. It is not uncommon for a headache to develop. I also get fullness in the ears and sort of a popping feeling. This has me very concerned. I should also mention that I have completely normal hearing.

      Moreover, in retrospect, there were moments weeks ago where I was REALLY irritated around noise. I just chalked it up to generalized anxiety, but now that I have a more severe version, it completely makes sense that I was experiencing a minor form of it and not realizing it.

      I am seeing an ENT, but I don't get a sense that she really takes my hyperacusis seriously. I guess my main question is the following: Has anyone's path started this way? i.e. it was initially chronic (non-sound-induced) dizziness? I have a systemic autoimmune disease and am currently trying predisone; I am not very optimistic that it's just inflammation.
       
      • Hug Hug x 1
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