I Think I Was Looking at Tinnitus Wrong and You Are Too

Discussion in 'Success Stories' started by TieMinnow, May 18, 2019.

    1. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      Couldn't have said this better Emmalee!!
       
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    2. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      The IP probably has had some lowering of T and discomfort as that happened once before. So the IP might be using fear reduction as a way to psych self by posting confidence of self consciousness and worth. Whenever there's even a slight decrease of emotional and physical pain, one will feel to be in a better place. There also might be a weighting of guilt from his previous lifestyle and his present responsibilities to family. His message is really to self. The IP got lucky with reduction as before. If his tinnitus was severe the story that was told would be different and he would be asking about coping methods, vitamins and seeking self support.

      I don't think that there's ever been one to post with severe tinnitus that talked about being positive without a reduction or settling of T.
       
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    3. nimx

      nimx Member

      Mine was severe for 2 years, when I started to try, with trial and error at the beginning, to manage my reactions I felt OK even with it ringing loud. Only after another year it started losing intensity and volume. Not vice versa. Now if I have t or not is the same. Perception shapes and changes everything. You could break your leg, still if you are insensitive to pain you won't suffer, trivial example but gives the idea. As I said, some people have no fault just can't get it and will refuse this possibility and I'm truly sorry I can't change this. I'm sorry if I offended anyone it was not my intention. :huganimation:
       
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    4. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      I can no longer maintain any interest in the comments I have read on this thread.
       
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    5. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      Sorry that your noise is so severe. I hope something helps you get some kind of reprieve.
       
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    6. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      I am okay J1MT.
      I have learnt to cope by means of meditation etc...

      If this is a serious support group designed to help people with debilitating tinnitus then it is actually my duty to confront self-preening well-meaning advice dished out by the latest ‘would-be tinnitus gurus,’who like to spout that old chestnut,
      “I did it - and you can do it to.”

      This tripe demeans the suffering of the most afflicted, and cheapens the image of those precious tormented souls like Gaby Olthuis, who opted for euthanasia, and the skipper James Ivory Jones, who threw himself off of a quarry ledge, because of mental and physical torture.

      Shame on you pathetic ‘nay-sayers.’
       
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    7. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      1E2E593A-84D7-4937-880D-13196C15BAD5.jpeg
       
    8. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      The debate handled with grace and class. Nice.
       
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    9. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @nimx I read your entire history. Reason being a comment by someone may not be black and white without more information. You have stated before that some with severe tinnitus will not be able to recover and that you understand.

      Sometimes people will hold a grudge or bitterness towards someone on one single incomplete thought when they have also expressed positives to the same subject matter before. So then it's wrong by not honoring that person for anything else that they say. That would not be fair to you and I'm sorry that this happened.
       
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    10. emmalee
      No Mood

      emmalee Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      not entirely sure anymore, stress is high on the list
      I completely agree with what you say here, @Greg Sacramento. Thank-you for this post. :huganimation:
       
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    11. punkaddict
      Cynical

      punkaddict Member

      Tinnitus Since:
      03/2019
      Cause of Tinnitus:
      Self-syringing (I think?)
      Very true, this happening to me on an hourly/daily basis. Usually during the day I say to myself "I can do this (until a cure)" and by evening I'm bawling, thinking it's impossible, wondering about how a cure maybe be many decades away, and how that will lead me to end my life.

      Either way, a cure is always on my mind and some times are much more desperate than others. Good on those who can ignore it and live normal lives, but I think I just have to admit it's severely ruining my life, despite being mild, my ASD amplifies everything. I just think of it like a messed up game of Russian roulette, if FX-322, Lenire, Decibel Therapeutics etc. cure or significantly reduce it in the next decade, I shoot a blank. If they do nothing or very little, the chamber's loaded.
       
    12. JohnAdams
      Cowboy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      We are fighting a bad paradigm and trying to get the community to focus on regenerative medicine. If you want TRT and CBT then it is available, go get it. We are saying that it shouldn't be promoted and definitely not funded with research monies in any way shape or form.

      If regenerative medicine fails, which it won't, then we can go back to the typical course of non-curative hypnosis techniques.
       
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    13. Henry Orlando FL
      Balanced

      Henry Orlando FL Member Benefactor

      Location:
      Orlando, FL
      Tinnitus Since:
      10/2011
      Cause of Tinnitus:
      Loud sound via earbuds from a digital device.
      I am a member of the American Tinnitus Association. They recently released a podcast with a psychologist, Dr. Bruce Hubbard, who has tinnitus and specializes in Cognitive Behavioral Therapy (CBT) for those with tinnitus.

      In the podcast, he tells you what you need to know about CBT treatment. He says 98% of people can achieve habituation. Sure that leaves 2% unable to habituate. Sure habituation is not a total cure and it sure was a step up for me.

      He also has a lot of free resources for those with tinnitus on his website.

      He says many people can complete CBT for tinnitus in as little as 2 to 10 sessions with someone who is trained in CBT for tinnitus but unfortunately most therapists are not adequately trained in CBT and don't know anything about tinnitus. On his resource page, he has a 90-minute webinar, a mindfulness meditation audio, recommendations for self-help books (he is working on one of his own) and other key self-help information to give it a go for yourself. He does offer coaching on dealing with tinnitus as well should you need/want that.

      I suggest you give it a listen and look.

      Hope this helps in some way.
       
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    14. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      The only bad paradigm I see here is certain members bashing others for actually getting better. If habituation (getting better) ensures one will live long enough to see a treatment/cure, then so be it.

      Also, regenerative medicine doesn't ensure anything. Acute tinnitus = a problem of the ear; chronic tinnitus = maladaptive changes in the brain - a brain problem (technology & neuromodulation for the win).
       
    15. JohnAdams
      Cowboy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I understand that but the emergence of regenerative medicine for the inner ear creates many questions that could be answered more quickly if there was more interest from the community. And you are insinuating that it wont help with chronic tinnitus, and that's another question that needs to be answered, quickly.
       
    16. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Thanks for sharing your story.
       
    17. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      I'd be all over the moon, if it helped silence chronic tinnitus. I just haven't seen any data yet (human or primate trials) that'd support that notion. There's not enough available info to draw a definitive conclusion.
      If you're talking a community worth of millions of patients, then yeah, maybe. Researchers and clinicians are well aware of hearing problems. It's the lack of funding, and possibly marketing the whole thing.
       
    18. JohnAdams
      Cowboy

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      It's a very good hypothesis, and supported by people like Will McLean of Frequency Therapeutics. Thus should be rapidly investigated. There is absolutely no good reason why it shouldn't be investigated quickly as a priority.
       
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    19. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      Sometimes my tinnitus does seem to come from my brain as I usually wake up every morning with brutal noise. It is hard to know. Autifony's drug was targeting the brain, but that didn't pan out as we know. Inner ear and/or brain who knows? We need something other than benzos and gabapentin.
       
    20. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      I'm sorry to hear that. The thing with neuro drugs is that they don't target only a specific brain region. They affect the chemistry of the whole brain (tapping into its communication system). Did you try any natural anxiolytic?
       
    21. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      I don't know what that is? Like Gaba Calm, magnesium, ginkgo biloba etc.?
       
    22. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      No no. "An anxiolytic is a medication or other intervention that inhibits anxiety."

      Try red wine e.g (just don't mix with the drugs you mentioned).
       
    23. just1morething
      Benevolent

      just1morething Member Benefactor

      Location:
      U.S.
      Tinnitus Since:
      2008
      Cause of Tinnitus:
      barotrauma, noise exposure, TMJ, neck?
      I don't like wine that well. Did you totally taper off Klonopin or do you still take small doses? How are you doing head noise wise? I'm using hearing aids/maskers plus some drugs and supplements such as b-vitamins and turmeric and sometimes different forms of magnesium.

      I only have generic valium at the moment and gabapentin 300 mg capsules. I'd like to get some clonazepam and follow Dr. Shulman's combo again but psychiatrists seem leary about prescribing that. Maybe supplements and HA/masker is the best for now?

      I do have a loud click in my left jaw but unsure if that is related to my tinnitus...my guess is no. I have a TMJ/sleep apnea appliance that I wear sometimes when I sleep.
       
      Last edited: Jun 18, 2019

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