NIDCD: It's A Noisy Planet Newsletter

Discussion in 'Awareness & Fundraising' started by TuxedoCat, May 21, 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
      Noisy Planet is a national public education campaign, sponsored by the United States National Institute on Deafness and other Communication Disorders (NIDCD), designed to increase awareness among parents of children ages 8 to 12 about the causes and prevention of noise-induced hearing loss.

      Today I received the Noisy Planet Newsletter and noted that 2 studies, one by Susan Shore and the other by Fan-Gang Zeng, both supported by NIDCD, were reported here . Anyone who signed up for NIDCD email updates probably received this as well.

      Considering Noisy Planet is directed at parents of young children, I'm glad to see some effort is being made to raise awareness to tinnitus and to research. I was also pleased to see that it was acknowledged that when it is severe, tinnitus can affect mental health and sleep. It was also acknowledged that available strategies for managing tinnitus do not work for all.

      Gosh, do you think it possible that this is a small victory in that all our feedback to the NIDCD strategic plan has made a difference?? I hope so!

      Tuxedo
       
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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
      "Although some treatments are available, such as counseling (to accept tinnitus symptoms) and noise-generating devices (to help tune out tinnitus), these treatments don’t work for everybody."

      :thankyousign:
       
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    3. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      “Anybody?”
       
      • Good Question Good Question x 1
    4. aot
      Depressed

      aot Member Podcast Patron Benefactor Hall of Fame

      Location:
      USA
      Tinnitus Since:
      2016. Worsened 11/2019.
      Cause of Tinnitus:
      Probably sound induced, worsened due to noise expouse + flu.
      I'm sure TRT and CBT help some people. But I don't think they're the absolute best solutions like many of their supporters/providers would lead us to believe.
       
    5. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      We lack a "best" or "absolute" solution. Nothing in the pipeline will be a "best" or "absolute" solution. Bimodal stim might be expected to help a substantial minority of people; ditto some of the drugs in the pipeline, but it's all smoke and mirrors in June 2020.

      I understand being skeptical of people selling these services for money; I don't understand the skepticism which is generally applied to people who have success with these treatments and are happy with the results.

      I see the same basic thing happen on anxiety forums w/r/t mindfulness stuff, and that's an even more ludicrous example because we have pretty bulletproof imaging data showing how these practices cause structural brain changes including a decrease in amygdala mass, which are direct correlates to reduced anxiety. Such imaging for tinnitus has only been done in a handful of studies, so you have to sort of piece things together, but we do know (again, for longitudinal studies backed by imaging data) that long term meditation practice causes gray-matter-density increases in two specific brain regions (one is the right anterior insula), where gray-matter-density deficits have been directly tied to tinnitus volume and distress in independent studies.

      So, basically, not only do we have a good number of people who say these practices helped them signficantly, in some cases after years of tinnitus -- we have mounting peer reviewed data that shines a light on how these practices might actually be reducing the intensity of tinnitus in some people, by causing very specific brain changes.

      I, and others, have posted all the relevant research about this here many times before. And yet, every time someone says that CBT or meditation or TRT or whatever you want to call this same basic set of practices helped them.... they're usually decried as a fraud, told that their tinnitus must not have been that bad to start with, or told that actually what they experienced was spontaneous remission.

      If someone has genuinely put in the 100s of hours that it takes to see meaningful changes from these practices and genuinely feels no better, that makes me feel bad because it's a lot of work to do to find out "this wasn't for you". On the other hand, the risks are... wasting some time. Compared to the risks of drugs, various very unproven things like stem cells or surgery, or the risk of simply doing nothing and miserable all the time, well, spending a half hour watching your breath every day seems pretty easy to me.
       
    6. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      The consequences can be far worse though, such as leaving someone feeling more suicidal. Imagine spending hundreds of hours and months on trying these CBT/TRT/mindfulness approaches, which oftentimes tell you that you have to fully believe that they will work for them to work, only to have to face the devastating truth that these coping mechanisms aren't good enough and your life's quality hasn't really improved. Then, when you share your experiences or the fact that you're struggling, other people will be quick to say you either didn't try the treatment long enough, didn't actually believe in it or should just try it again, making you feel even less understood and more isolated. While more people should nonetheless try these approaches, as they may help some, the most common criticism of them is their overstated benefits and the patient-blaming ideas they're based on.
      Usually, those people also talk about their experiences as if they're universal which ignores the experiences of severe sufferers. It's very common for people who recommend TRT or people like JCH to say that we can all get better and therefore imply that there isn't really a need for medial treatments just better access to TRT, CBT and so on.
       
    7. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      Without disagreeing with a lot of what you wrote, I think the characterization of CBT in general as "patient blaming" is way off base; in fact, "blame" is just another judgement which is one of the big bullet points that lead to cognitive distortions. So, there might be bad CBT providers who don't understand their own material and engage in "patient blaming", just as those who abuse biblical text to justify various evils.

      Hmm; from my differently-biased perspective, my read has been that there are a lot more threads where someone says "hey this worked for me and my life is better and that's awesome" and then gets dumped on, than people who say "this worked for me and will work for anyone if only you can try hard enough". However, I can certainly think of multiple examples of both kinds of threads from the last ~year or so.

      Which of these two things is more common is probably less important than just agreeing that both viewpoints are fringe arguments that don't really apply to the mainstream -- most people who put a lot of effort into mindfulness work will see some benefits, just like most people who put a lot of effort into physical exercise will see some strength gains. There is variance in both, along genetic and other lines.

      My observation both here and on various anxiety boards is that often the anti-CBT or anti-whatever voices win out over time, because people who find genuine relief or a new context for dealing with their conditions, are prone to simply vanishing over time because they feel better and continuing to interact with a community which largely does not isn't beneficial to them. You can see this trend mathematically here, if you scrape the number of people who posted success stories of one kind or another, and became inactive shortly after. In many cases after being told their success was bullshit and they were deluding themselves.
       
    8. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      That's another problem with CBT, the therapist gets to decide what's rational and irrational. When does catastrophizing start? What is fear and avoidance behaviour and what are common sense precautions? Also, the Cognitive Model of Tinnitus clearly states that it's only the emotional reaction of the patient that makes tinnitus debilitating. Lawrence McKenna even wrote in a post for the BTA that everyone can learn to live with tinnitus without being distressed by it. Jennifer Gans said people with bothersome tinnitus have a certain personality type and heavily implies that's the reason they can't cope. She also talks about the changes within the brain that mindfulness can lead to but makes it sound like these changes are possible for everyone if they just try mindfulness hard enough. So it's reasonable to assume that most CBT approaches for tinnitus are based on the same patient-blaming ideas.
       
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    9. linearb
      Psychedelic

      linearb Member Benefactor Hall of Fame

      Location:
      beliefs are makyo and reality ignores them
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      karma
      I've had both positive and negative experiences with CBT providers, which colors my responses here.
      I don't think the therapist gets to "decide" anything; they should just be there to offer an outside perspective. Nothing more, nothing less. Ultimately I think it's always up to the patient to decide what is and isn't a distorted thought, and actually the way a particular thought is judged is much less important than the initial work of becoming aware of your thoughts and conscious participation in them. The best therapist can merely lead you to the water and suggest that it might in some way alleviate your thirst; beware of people trying to push you over some edge.

      I don't know when catastrophic thinking "starts", in general; I mostly only know what it feels like when my own brain starts to do it, and I have some general inklings when the handful of people I am closest to are exhibiting behavioral signs of the same problem. Ultimately it's up to each person to decide how to think; I believe all of these practices should just be aimed at opening the door to understanding the degree to which this is (and is not) possible.

      I saw Jennifer Gans speak once and when she got to the point where she admitted her own meditation practice involved sitting for 3 to 5 minutes each morning it was all I could do to not burst out laughing and try to take her place on the podium. That said, I didn't think she was a bad faith actor; she came across to me as someone who genuinely wanted to help a distressed and hard to reach population, but perhaps didn't really have a toolset to offer to do so with? It's worth noting that I cannot believe she was especially well compensated for this appearance; it was to a small audience of tinnitus sufferers at an unpaid event. It would not surprise me if she were in town for other reasons and did this for free. She seemed genuine in her convictions to me, just clueless in some ways that made me feel embarrassed at my own arrogance for feeling so dismissive and judgmental about a credential professional. That's a weird feeling that takes a special provocation; usually I have no problem writing someone off as having broken thinking, and not feel bad about it.

      The Cognitive Model of Tinnitus isn't anything I am familiar with, so I have no opinion except that my own model of tinnitus is "maladaptive neuroplastic changes at the DCN level which cause tactile sensory percepts to be interpreted as audio, which has a variety of downstream effects on auditory and conscious processing which can involve changes to the limbic system and emotional processing". So, when I think about "what is tinnitus?" I am not really thinking in the same terms as cognitive model folks of any stripe.

      When I think, "what is the nature of suffering, how does it relate to the experience of consciousness, and what is consciousness exactly anyway?" then the cognitive people start making sense to me, from Ram Das to Kabat-Zinn to empathetic and skilled therapists who know their own strengths and limits.
       
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