What Is Your Impression of Tinnitus Research?

Discussion in 'Awareness & Fundraising' started by TuxedoCat, Jul 13, 2020.

    1. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hello everyone,

      Having worked in midsize and large pharmaceutical companies for 27 years, I have spent most, if not all, of my career around research.

      I've had tinnitus now for about 3 years and have recently been asked about my impressions of tinnitus research. Of course I have them, but I'd also like to know about your impressions as well.

      I'm opening this thread to gather your opinion about the following as well as any other kernels of wisdom you might wish to share. So here goes.

      What is your impression of tinnitus research?
      • Is it taken seriously by government funding agencies? Do you detect differences in the level of seriousness among the US, UK and Europe? What about other parts of the world?
      • Are there misperceptions about tinnitus and how it should be treated? Are there misperceptions about tinnitus patients?
      • What about the interface between tinnitus researchers and tinnitus patients. Is it working? What should we keep doing and what should we stop doing? Do you think government agencies and researchers have a favorable view of the tinnitus community? Why or why not?
      • Does the current mix of basic science, psychological, pharmacological and device research seem satisfactory? What should there be more of? Less of?
      • What do you consider a treatment success for a tinnitus patient -- lessening of distress or a decrease in loudness or silencing the tinnitus sounds? Do you think governments, tinnitus organizations like the BTA and ATA have the same view as you on what constitutes a successful outcome?
      Thanks in advance for participating in this conversation. -TuxedoCat
       
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    2. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Thank you for asking all these great questions!
      No.
      There's an overwhelming focus on tinnitus distress which is understandable since we can't reduce it yet but this has lead to misconceptions such as loudness not being important. This is in part due to the Cognitive Model of Tinnitus. There's not enough awareness for how debilitating it can be, how many people are suffering and that there aren't really any treatments. Many sites make it seem like we already have well-established and effective treatments and use phrases such as tinnitus can be "managed successfully". Severe patients are usually not believed. Typical misconceptions are: no real need for medical treatments, severe sufferers are just neurotic and negative, tinnitus can't be debilitating in itself, it's just the patient's attitude, and so on.
      I think tinnitus patients are being more involved in research but severe long-term sufferers seem to get left out. Oftentimes Tinnitus Hub gets invited after all plans are already set in stone and can't affect research much.
      Researchers overall seem interested in working closely with tinnitus patients and understand that they're essential to their work. Many ENTs, audiologists and therapists, however, seem to look down on severe sufferers and don't believe them. I worry that government agencies don't understand how debilitating this condition can be and don't see the need for medical treatments.
      No. We need more basic science and pharmacological and device research, though I don't think to focus on subtypes will help and I'm worried that it will hold back research.
      Definitely decreased loudness or silencing tinnitus. We shouldn't view treatments that reduce tinnitus distress as real treatments and I don't know any other condition that has such a heavy focus on distress reduction. Imagine CBT for visual snow or visual snow habituation therapy, those are management strategies that can help certain individuals but aren't enough. The promotion of those management tools has created the misconception that we already have effective treatments.
      No, especially the ATA has made it clear that they base their views on the Cognitive Model of Tinnitus and thus don't adequately represent severe sufferers. During this year's Tinnitus Week (the topic was research) their only contribution was a video by a woman saying it gets betters. The BTA says on their website that people can learn to live with tinnitus without being distressed by it and their article on stress explains that the type of tinnitus is basically irrelevant and it's your reaction that makes it debilitating. In a podcast episode, they argue what a cure for tinnitus would even mean. David Stockdale says there's an active debate whether a cure means silencing tinnitus or learning to cope well with it. The BTA seems to understand the need for medical treatments but they, like the ATA, spread the message that everyone can learn to cope well with tinnitus and undermine the need for treatments that can reduce tinnitus. The German Tinnitus League says on their website people can learn to ignore their tinnitus. Several people working for the GTA have stated that loudness isn't relevant, that the patient's attitude decides whether someone suffers or not or said that the emotional reaction is what causes the pain in people with pain-hyperacusis.
       
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    3. AUTHOR
      AUTHOR
      TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi Autumnly, I'm glad you brought up the issue of heterogeneity and subtypes. I meant to include that among the questions because I find my view on this is evolving. Understanding subtypes and heterogeneity is important, but the research community may be getting ahead of themselves. If and when there are real treatments that work to reduce or silence the tinnitus precept and they work for some but not all, then the question of subtyping and heterogeneity will become very important. Until then I fear that subtyping to the current set of European researchers has to do with identifying non responders to psychological therapies, a classification which may have only some or little to do with responses to pharmacologic treatments which can be measured with an objective measure of the tinnitus precept.

      I'm currently giving the Five Big Personality paper a critical read. So far I'm not liking what I'm reading but I haven't really gotten to the punch line yet, I hope to get there later tonight. Don't know if you are familiar with the paper but the intro talks about work that shows that personality "traits such as high neuroticism and low extraversion are common hallmarks of tinnitus patients." So far I haven't come across any attempt by the authors to measure tinnitus loudness and intrusiveness, only distress. In addition I wonder... did it ever occur to them that maybe we are neurotic because we have tinnitus, no one knows what is causing it, no one can help us with a real treatment, AND no one knows the true natural history of the condition and if it can be expected to worsen with time. LOL that's enough to make anyone neurotic! -TC
       
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    4. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Completely agree. Tinnitus subtypes research also seems based on the idea that we already have effective treatments and just have to find out who they work for so that we can sort people into groups.
      I remember reaching out to the authors saying that I'm worried this paper might harm severe sufferers. If I remember correctly, one of the authors replied saying that severe tinnitus could be a cause for higher neuroticism levels but they didn't mention that in the paper (but please let me know if I'm wrong). I'm worried the paper will do more harm than good and perpetuate the idea that tinnitus sufferers, especially long-term sufferers, are just neurotic and therefore can't cope. The BTA will discuss the paper during their next journal club session and we can only guess how they are going to interpret it, they already discussed McKenna's recent mindfulness for tinnitus study.
       
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    5. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Some research groups are doing their best and some have treatment for physical problems that also can cause tinnitus. One problem is that doctors are uneducated and medical treatment takes time, effect and expense.
      Many don't because of fee paid management consultant companies controlling the tinnitus space.
      It's not believed by most that long-term sufferers are neurotic, but some believe that many who have tinnitus don't have severe tinnitus. It's understandable that those with long term tinnitus might develop hypertension where that can cause physical problems with relation to tinnitus.

      What places many with tinnitus into a box is that any exam or treatment could make tinnitus worse.
       
    6. gerhei

      gerhei Member

      Tinnitus Since:
      March 2019
      Cause of Tinnitus:
      Unknown/After a cold
      Hey, here are my impressions:

      Definitely not. I have no overview over the guideline developments in other parts of the world, although I have the impression that recently, some more things are going on in Europe. But maybe I am mistaken.

      There are huge misperceptions and I am not getting tired to mention the elephant in the room: Tinnitus subtypes. It is really amazing to see the ignorance in research which always seems to suggest that there is one solution for all tinnitus sufferers. This is a waste of money and patients life time. As I have written elsewhere, there are already various treatments for specific subtypes, but it seems that noone is willing or able to differentiate the treatments according to the underlying cause of the tinnitus. Tinnitus caused by neck muscles needs a different treatment than tinnitus caused by hearing loss or something else. To my last knowledge, there are something like 800 different causes of tinnitus. It is childish to belive that there is one treatment for tinnitus as if it would be something trivial such as a broken finger.

      Regarding patients: I think it is underestimated how debilitating tinnitus can be.


      I've got no experience regarding this question. What I know is that - at least in Germany - each specialized doctor is "cooking his own soup" as we use to say here. I have not the impression that patients have easy access to interdisciplinary research centers or institutes. Maybe the internet contributes to improve the communication between patients and researchers. This could definetely be improved because I cannot imagine any tinnitus sufferer not being ready to go for every study.


      In principle, I would say that the basic direction of the mixing is improving. I am not against talking about psychology for tinnitus sufferers because I believe that it can really help to prevent people from falling "off the cliff" with the diagnosis and not proper treatment in sight for their specific tinnitus. However, to declare the whole issue to be purely psychological, is an oversimplication and I have the impression that there are some actors in Germany that are pushing the idea that suffering from tinnitus is nothing more than a psychological disorder that can be corrected with 15 sessions of councelling or so. This is idiotic and counter productive. It would be better for the psychology of the patients to recognize their suffering and to search together for solutions.

      The question of devices and pharmacology: As I said before, it all depends on your tinnitus subtype. For some cases of tinnitus, medication may be the right path. For someone suffering from tinnitus caused by the neck, this is useless.

      However, I could imagine that mixing in more methods could lead potentially to more treatments that than could be applied for different patient groups. This is something positive, although I still don't see that something like this is done deliberately.


      I have two different kinds of tinnitus. One tinnitus doesn't bother me at all. I'd be happy to live with it until the end of my life. Another kind of tinnitus is very high in its tone (not in loudness) and extremely annoying (thank God not always) and I would be ready to do anything in order to get rid of it. If I suppose that there are tinnitus sounds that someone can live with in terms of loudness and frequency, I think that success can be defined in a spectrum of "doesn't bother me" until "disappeared".

      As for the last question I cannot say anything.
       
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    7. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      This is not Research News per se, it is an up to date summary of the situation about the research in tinnitus.

      Tinnitus, which is the perception of sound in the absence of a corresponding external acoustic stimulus, including change of hearing and neural plasticity, has become an increasingly important ailment affecting the daily life of a considerable proportion of the population and causing significant burdens for both the affected individuals and society as a whole. Here, we briefly review the epidemiology and classification of tinnitus, and the currently available treatments are discussed in terms of the available evidence for their mechanisms and efficacy. The conclusion drawn from the available evidence is that there is no specific medication for tinnitus treatment at present, and tinnitus management might provide better solutions. Therapeutic interventions for tinnitus should be based on a comprehensive understanding of the etiology and features of individual cases of tinnitus, and more high quality and large-scale research studies are urgently needed to develop more efficacious medications.

      Full article: https://www.hindawi.com/journals/np/2020/7438461/
       

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