Why Is There No Cure for Tinnitus?

Discussion in 'Research News' started by Hazel, Sep 7, 2019.

    1. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      This is the million dollar question isn't it? The reason many of you are here every day asking for help, venting your frustrations, and bonding over this affliction is that we don't have a cure. And what's worse we don't yet seem close to it either. This article provides a comprehensive overview of all the reasons why. It's co-authored, amongst others, by @David from the BTA.

      I'm sure the article won't contain much new information for those of you intimately familiar with tinnitus research, but for the newbies or those who don't have the time or inclinication to spend many hours digging, it's a highly informative summary of a complex and multi-faceted topic.

      It's written in quite an accessible manner, so if you have 30 minutes to spare I would say read the whole thing. But if you don't, here's my summary:

      There's a wide gap between the treatments that patients want and what's actually available. Overwhelmingly, patients are NOT satisfied with current tinnitus services. They want treatments that truly alleviate the tinnitus itself, rather than help to cope with it. Yet, even though the economic incentives are clear, the amount of tinnitus research done is hugely disproportional to the size of the problem.

      The main obstacles to a cure are listed as:

      • A dire lack of research funding, compared to other conditions with a similar health/economic burden;
      • The interdisciplinary nature of tinnitus research makes it quite fragmented;
      • Even the basic facts about tinnitus, like how many people have it, are unclear and disputed;
      • The heterogeneity of the condition, and its as yet undefined subtypes, complicate testing of treatments;
      • Clinical trials often include or exclude the wrong patient groups;
      • Designing a good trial is hard because of the lack of objective outcome measures or biomarkers;
      • The basic brain mechanisms underlying tinnitus are still unknown (different theories exist);
      • Treatments that work in animal models often fail in human subjects;
      • Some drugs may only work for patients who've had tinnitus for shorter/longer;
      • There is no agreement on what a "cure" even means — total eradication of the tinnitus might not be realistic;
      • There are few precedents for how to get a tinnitus drug to market.

      The article does not pose much in terms of solutions, but perhaps that was deliberate. Hopefully, this is just a first step and further discussion and collaboration will follow, which will lead to concrete solutions.
       
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    2. amandagreen

      amandagreen Member

      Tinnitus Since:
      02/2015
      Cause of Tinnitus:
      loud music
      It doesn't quite offer a solution to it but it's definitely interesting to see how they put all the reasons why we haven't found a cure for tinnitus in perspective.

      My tinnitus derived from years of being careless while listening to super loud music. While I did find relief with an OTC med called Lipo-Flavonoid, I understand how everything works in different ways and what works for me, unfortunately, may not work for somebody else.
       
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    3. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      dirty drugs
      I haven't read the article yet, but I feel the biggest reason there is no cure is because no one takes it as a serious condition. We need documentaries on tv telling how people have committed suicide over this. Show soldiers who have limbs amputated and tinnitus, but if they only had once choice would prefer to get rid of the tinnitus rather than having limbs again. Tinnitus is usually taken as a trivial thing, but the mental torture it can afflict on a person needs to be put to the forefront.

      Once it gets the attention it requires, then maybe more research funding will be put towards a cure. The military needs to put up more funding, but you will have to make them do it.

      Too often tinnitus is put across in a jokey way, this needs to change.
       
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    4. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      At least we have William Shatner going on TV and Twitter telling people that he can block it out by reading a book.
       
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    5. Phendran
      Benevolent

      Phendran Member

      Location:
      Sweden
      Tinnitus Since:
      2009
      Cause of Tinnitus:
      Unknown
      Yeah. Things like that make me question if Free Speech is such a good idea after all.
       
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    6. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      dirty drugs
      I wish i could read a book with T. Can I hell.

      Need the relatives of people who have committed suicide, need servicemen up there, need famous people who really are suffering from it up there.

      Need petitions with 10s of thousands of signatures sending to government. But getting those signatures is hard.
       
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    7. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      dirty drugs
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    8. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Call me crazy (please don't call me crazy :arghh:) but I think we should be researching this on our own here and really putting forth some effort to figure this out. It could be fruitless bit we should try.

      Just take curcumin for instance, while it doesn't work for everyone, it does help some of us to a degree, which is more than any ENT will recommend. I strongly believe we have power here. We know noise trauma can cause hearing loss and tinnitus but not everyone with hearing loss has tinnitus. I've done a bit of research and I have some formal education in medicine. I would be more than happy to help in an effort like this.
       
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    9. AUTHOR
      AUTHOR
      Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      It's not crazy. We'd need some good data collection tools though to pull it off.
       
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    10. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Hey, you guys have a HUGE record of tinnitus patient experience at your finger tips. You are info wealthy. Perhaps you should hire some volunteers to scour through all of the posts claiming success or failure with certain techniques and then put each of the respondents into some well thought out demographic categories???? I'm sure you have already thought about these things.

      I dunno just a thought.
       
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    11. foam

      foam Member

      Tinnitus Since:
      7/2019
      Cause of Tinnitus:
      Unknown
      It's because like most conditions there are 100 different causes. How many different kinds of Hodgkins disease have been identified? It's like 20... or something, maybe more. Every condition is like this. There's no one treatment for everyone.
       
    12. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      I have watched a few of William Shatner videos but never heard him say he can block out his tinnitus by reading a book. This is a gross misrepresentation of tinnitus and to make such a comment proves he has no idea how debilitating it can be when it is severe, unlike his which is very mild.

      Tinnitus comes in many forms and intensities and no two people experience it the same. As a (one time) celebrity, William Shatner may believe he's doing good but this kind of negative counselling, can do a lot of harm to someone that is having a difficult time coping with tinnitus.

      Michael
       
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    13. FGG

      FGG Member Podcast Patron Benefactor

      Tinnitus Since:
      01/2019
      Cause of Tinnitus:
      Multi-factorial
      I'm not sure what help I can be but I also have a formal education in medicine (DVM-- but I am able to at least read and digest the differences) and am willing to offer my assistance.
       
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    14. foam

      foam Member

      Tinnitus Since:
      7/2019
      Cause of Tinnitus:
      Unknown
      I always thought William Shatner's tinnitus was worst of the worst, like a jet engine in his brain?
       
    15. JaysterT

      JaysterT Member

      Tinnitus Since:
      05/2019
      Cause of Tinnitus:
      Ototoxicty?
      If the number of those suffering from tinnitus is even somewhat accurate, that in itself can equate to millions of signatures/donations. Let alone family and friends of those suffering. The money for research is out there. We just need to get together to get the ball rolling.
       
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    16. CricketEars

      CricketEars Member Benefactor

      Tinnitus Since:
      10/2003
      Red tape. Too many rules and regulations that hinder progress.
       
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    17. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Evidently, this is not the case if he can block out his tinnitus by reading a book. I am an avid reader and was unable to read for two years because my tinnitus was so severe. I have variable tinnitus which changed to this back in 2008. It took four years to habituate for the 2nd time. My tinnitus can still reach severe levels and I am unable to read and fully concentrate when it is this intrusive.

      Michael
       
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    18. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      dirty drugs
      I've emailed a documentary filmmaker I loosely know to see if he is interested in making a film/series. May so no, but no harm in trying.
       
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    19. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      It was on his twitter.
       
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    20. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      dirty drugs
      Got a reply and they are interested in knowing more about the idea.

      Trying to think what could be included:

      - veterans
      - suicide
      - quality of life
      - different types of tinnitus
      - reasons for no cure / research funding / not considered serious condition / doctor says live with it

      I think those are the main ones. Don't need to make it too complicated.
       
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    21. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      John, this isn't that crazy at all. And as it happens, we're developing a bolus of talent in experimental research in the group (myself, @lcj, at least), who could help to guide some really high-quality, publishable research into the issue. If the community here is willing, we have the numbers to make a real difference.
       
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    22. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      I think that's an awesome idea @all to gain. Keep us posted (maybe start a new trackable thread?)
       
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    23. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      Happy to contribute to this. There is tonnes we could do, if the community is willing. We'd need numbers though: we can't just have the same 25 people participate in each data collection effort.
       
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    24. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      This could provide *some* information, but the data we'd get from this would be murky, anecdotal. Better to start fresh, develop some well-designed, empirically-valid tools that we could send around to people, and then combine this with additionally well-designed, empirically-valid emotional/cognitive tests (that can often be administered online these days).

      This would require some work... but not that much work.
       
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    25. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      Hi @FGG - your offer is officially noted; 100% non-recindable. :)
       
    26. OregonDad

      OregonDad Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Hearing loss
      I actually told my GP a few days ago when he gave me the " there's no treatment" spiel.

      What if we looked at Polio, Aids or cancer that way. If nobody tries then failure is guaranteed.

      The problem is the prescribed treatment is to ignore it and adapt. Part of that for many is to not talk about it. Therein lies the problem.
       
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    27. KMc24

      KMc24 Member Benefactor

      Tinnitus Since:
      3/2018
      Cause of Tinnitus:
      Noise induced
      The loss of potential contributions to society by many individuals ruined by this affliction. Also, the problems it can cause in interpersonal relationships. In addition it's possible link to visual disturbances and dementia.
       
    28. AUTHOR
      AUTHOR
      Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      We've successfully gathered quite large volumes of data in the past, see for instance this survey to which we got over 5,000 responses, or this one, which got over 6,000 responses.

      These have already led to some academic publications, but there's more data analysis to be done on our existing datasets, even before we collect new data.

      We do want to collect more data too. We currently use SurveyMonkey for this, but ideally we'd like to build our own data collection portal.

      I agree, we need well-structured data, in large volumes.

      May I ask what your skills are? You can also PM me and @Markku to discuss further.
       
    29. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      Amazing! I had no idea - do you have links to your previous publications? Would love to check them out. Those numbers are massive - there's tonnes and tonnes that could be done with good quality data like that.
      SurveyMonkey is very good; Qualtrics is the other big one, and the one I use more often these days. Building your own portal could have some advantages... but maybe not enough to make it a priority...?
      I'm a university professor/researcher in psychology and cognitive/affective neuroscience. I've never studied tinnitus, the ear, or the auditory cortex before; but I'm well-trained in a) survey development, study design, data collection, and statistics, b) cognitive/emotional processing, the limbic system, EEG/MRI/neurostimulation, and c) the scientific publication process. I see Markku just started a PM with me - I'll follow up further there.
       
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    30. MattS
      Relaxed

      MattS Member

      Tinnitus Since:
      06/2019
      Cause of Tinnitus:
      Power Tools
      Doh... I see that you've linked to both the survey and the articles. Fantastic... reading them now.
       
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