Both Tinnitus & Hyperacusis Getting Worse...

Discussion in 'Support' started by LizO, Mar 2, 2016.

    1. LizO

      LizO Member

      Tinnitus Since:
      Cause of Tinnitus:
      Loud Music (Clubbing)
      Hi you all...
      I'm having a rough night tonight. I had a huge spike about a year ago when I went to a loud bar and didn't have earplugs with me. I had already habituated to tinnitus when I first got it, after a series of nights of clubbing when I was in college. For the past year I have been mentally kicking myself for that mistake of going out (on my birthday, nonetheless), and haven't been able to do the things I enjoy, like performing music, or going to yoga classes with sound healing elements and things like that, or a lot of social events, because I'm constantly afraid of how loud it's going to be. It's really been debilitating mentally but I've been trying my best to stay positive and let myself habituate, and I seem to have gotten used to it a little, although any loud unexpected sound or situation seems to make it worse and I'm constantly aware of it at night when a couple years ago I had gotten to the place where I didn't notice it at all at night.

      It used to be just a slightly electric, static sound, like the sound of a tv being on but nothing actually playing, if that makes any sense. I described it as a "hollow fuzz echo" in my journal. I (probably like most of us!) wish I could go back to where it was then, since it was relatively mild and the same level in both ears. Since my spike last year it has morphed into two different sounds- the right ear is lower in volume but sometimes has a variety of sounds that kind of fade out after I've been lying down for a while. The left ear is louder, and feels more sensitive and general, and as of last night started TICKING intermittently. It's like the sound of a clock ticking but it doesn't have any regularity, which is what makes me feel a little crazy. I'm really thrown off by it because I've never had this kind of sound before, and I didn't even do anything out of the ordinary yesterday, so I have no idea why it's started. That's the thing that is most difficult about tinnitus, and hyperacusis, is feeling like you have no control over whether the sound could get louder or worse. I feel like I am barely able to cope as it is and can't tolerate it getting any worse. But I'm 30 so I've got a long way to go and a lot of opportunities for it to get worse. And what I'm experiencing is that the older I get, the more sensitive I'm getting. I'm particularly sensitive to the sound of metal - the oven opening, brakes squealing, etc. - and right now am living in the city and it's torturous. It's hard for me to admit that I might have to completely change my lifestyle because of tinnitus - I wanted to be a musician and entertainer and haven't had the sort of success I was hoping for yet - but this extreme sensitivity, hyperacusis, and worsening tinnitus is standing in my way more and more. It's a vicious cycle because if I don't go after my dreams I won't feel satisfied, but my body can apparently only function out in the forest where it's quiet and there's no scraping metallic sounds for miles around. :(

      And to top it off, I don't feel like I have anyone to talk to-- I called my mother tonight and just felt worse afterwards because she basically scoffs at me and insinuates that I'm over-dramatic and need to just suck it up. I'm constantly battling with debilitating amounts of anxiety, fear, sadness, and over-sensitivity to this very over-stimulating world, and the lack of love or warmth or nurturing I feel makes me feel suicidal- and the tinnitus just makes all of that worse. Anyway I would welcome any advice as I really want to feel better and have hope and keep pursuing all my dreams and not let this dictate my life, or ruin it.

      Thank you and I wish for all the same hope and perseverance for all of you!
      • Hug Hug x 5
    2. PaulBe

      PaulBe Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Probably sound, though never proven
      The ticking sounds like middle ear myoclonus. Look that one up through the searches here. There's a few threads about it.
    3. attheedgeofscience
      No Mood

      attheedgeofscience Member Benefactor Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      Head Injury
      There is currently a clinical trial by the Swiss pharmaceutical, Auris Medical - but it only accepts patients with acute stage tinnitus (< 3 and <6 months).

      Tinnitus is essentially incurable - to my knowledge there are really only two options that may provide some degree of relief: an anti-epileptic called Trobalt and the Swiss neurosurgeon Prof. Jeanmonod. The degree of relief is indeed unpredictable and Trobalt would have to be prescribed off-label. As for Prof. Jeanmonod, he requires patients to fit a certain clinical diagnostic profile (thalamocortical dysrhythmia) in order to be eligible for non-invasive surgery. The clinical evaluation and surgery is somewhat/very costly, respectively. I cannot really recommend as it is indeed experimental.

      Regarding the above, a number of members on this forum are against drug treatments - pointing to the risk of side-effects. That's an "interesting" point-of-view when we think of how careless and "willing to accept risks" society is when it comes to noise exposure. The "side-effects" of a concert or a night-out to a club are in my view far, far, greater than the risks of a limited course of, say, anti-epileptics.

      And to those who read my posts, yes, I did put my money where my mouth is in this regard (as I always do) - here is the link documenting my correspondence with the EU's office of health related matters (advocating against noise pollution):
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