Have Your Say → Transform Tinnitus Research

Discussion in 'Research News' started by Tinnitus Talk, Apr 24, 2022.

    1. transform-tinnitus-research-survey.png

      We talk a lot about research on Tinnitus Talk.
      What’s going on, what we expect from future treatments, when they are coming etc. There’s often an undercurrent of incomprehension or frustration in research discussions: Why are they focusing on this and not that? How can they market this as ‘effective’? If you’ve spent any time discussing tinnitus research, you’ll know what we mean.

      Our aim is to convert this community from passive followers of research to influencers of the research agenda.
      For that, we need hard data on what tinnitus sufferers want and expect from research. We can then use this data to lobby researchers and companies.

      A survey like this has never been conducted to our knowledge (although efforts were made on a smaller scale to involve patients in research).
      This is a true opportunity to make your voice heard. So please help us influence the course of tinnitus research and fill in the survey!
       
      • Like Like x 6
      • Useful Useful x 3
      • Winner Winner x 1
    2. Damocles
      No Mood

      Damocles Member Benefactor Hall of Fame

      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Otitis
      cim.jpeg

      Have to say, I needed to think about this▼ one for a few minutes...

      23.PNG

      23. If you had a 50% chance of being cured, which of the following risks would you be willing to take?

      a. A 10% risk of your T/H getting worse.

      Hardest question on the survey by far.
       
      • Agree Agree x 10
      • Like Like x 3
    3. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      One of the things that bothers me is the exclusion criteria when it comes to a lot of the trials. I have attempted to sign up for a couple but they always list antidepressants or anti anxiety meds are exclusions. This eliminates a lot of people who would be willing to enter trials.
       
      • Agree Agree x 4
      • Useful Useful x 1
    4. Nobody19

      Nobody19 Member Podcast Patron Benefactor

      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Clubbing
      Done!
       
      • Winner Winner x 3
    5. Gabriel5050
      Balanced

      Gabriel5050 Member Podcast Patron Benefactor

      Tinnitus Since:
      02/2018
      Cause of Tinnitus:
      Noise exposure (most likely)
      My message as a regular person to the research community boils down to this:

      I don't care what it takes, just find a way to get rid of tinnitus. We don't have anything reliable.
       
      • Agree Agree x 7
      • Like Like x 3
      • Winner Winner x 2
    6. Samy

      Samy Member

      Tinnitus Since:
      01/2022
      Cause of Tinnitus:
      Acoustic trauma
      Done.
       
      • Winner Winner x 3
    7. Tom_Tom

      Tom_Tom Member

      Location:
      Kent, UK
      Tinnitus Since:
      February 2022
      Cause of Tinnitus:
      Not sure, probably power tools
      Done. I agree with @Damocles on the hardest question of the survey - had to sit and ponder that one for a while.
       
      • Agree Agree x 1
      • Useful Useful x 1
    8. EDDTEKK

      EDDTEKK Member

      Location:
      Germany
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Acoustic Trauma
      For me any treatment is worth the risk... We need treatments as soon as possible! Can’t live with this torture for the next several years.
       
      • Agree Agree x 4
      • Hug Hug x 1
    9. 2noist

      2noist Member

      Tinnitus Since:
      04/2015
      A bang-up job. I'd pay a year's salary for a working treatment, would spend all my savings on it and if needed, take out a loan on top.
       
      • Agree Agree x 6
      • Like Like x 2
    10. JPGL
      Frustrated

      JPGL Member Benefactor

      Location:
      Spain
      Tinnitus Since:
      10/2015
      Cause of Tinnitus:
      Hearing loss? Noise? Stress? Unknown
      I did the survey and also donated again.
       
      • Like Like x 1
    11. Joeseph Stope
      Innocent

      Joeseph Stope Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      noise? infection? negative stress? other?
      I'm kind of fixated by this problem I have with contending with the level of noise. I'm a chronic case (30 years back)...

      On the one hand, I can wear my 3M hearing protection when I'm going through the traffic in town to protect my hearing... but the tinnitus seems to be getting louder.

      On the other hand, I could expose my OHCs and IHCs to the loud volume and hope that I'll get used to it again.

      Mostly I don't have so much of a problem -- until some big motor bike rolls by -- or three, four, five of them together. Also, even a car that doesn't have the silencer properly fitted can cause a day of misery.

      The fear of course is that it will send my tinnitus permanently higher.
       
      • Hug Hug x 1
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