Awareness Idea for Patient Research: Join the Dots

Discussion in 'Support' started by Steve H, May 3, 2016.

tinnitus forum
    1. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I've been thinking about a project that anyone can get involved with and that may be of a real benefit. I came up with an idea called Join the Dots.

      The basic premise is that we all do our research into tinnitus when we get it, we scour the internet and find everything we possibly can. I figure lets try and coordinate that research and turn it into something that benefits everyone.

      I even made a picture for it :) - under which there's a bit more detail. Please let me know what you think, really want feedback and to understand if others see it as useful and if not, what would you suggest?

      Join the dots pic.jpeg

      The thing that got me thinking about this was the Josef Rauschecker work I saw at TRI. He has identified the grey matter shrinkage in the ventromedial prefrontal cortex in tinnitus patients. To my knowledge though nobody has yet built on this - I wonder can we find a way of cognitive training that is proven re-build this area and test it out to see if it helps our tinnitus? Maybe there is other research that we can find for something completely different that has a hypothesis of treatment?

      If we can do that then can we connect up research across other disciplines, gather info on a particular intervention and see if there are lessons to be learned elsewhere? Maybe we could even influence research projects like this. At the very least we can collect all of the information in one place and make it easy for everyone to search and understand.
       
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    2. JasonP

      JasonP Member

      Tinnitus Since:
      6/2006
      That sounds like a cool idea to me. Teamwork is essential. I believe all of us on here no matter our religion, culture, or race are united to finding a cure for tinnitus. Sometimes it takes tragedy to bring people together.
       
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    3. Cillian

      Cillian Member

      Tinnitus Since:
      04/16
      Cause of Tinnitus:
      Sinus infection
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    4. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Great idea! im in :D
       
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    5. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Great Idea @Steve H,
      All research for tinnitus is a positive move forward .....lots of love glynis
       
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    6. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      @Steve H Support your great idea! What are the next steps so everyone can start contributing?
       
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    7. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      good effort @Steve H
      Unfortunately we've seen it all before! And we witnessed the enthusiasm of tinnitus community to "actually" do something!

      You're in? Well replying to people's messages would be a nice start:(
       
    8. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      Let's try to be positive. @Steve H what did you need us to do to help with efforts?
       
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    9. Mario martz
      Creative

      Mario martz Member

      Tinnitus Since:
      02/2016
      Lets remain positive! :D:D:D
       
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    10. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      Okay, I'm tired and ready to zonk. But because I've been intrigued and reading lately about the potential for tai chi to help tinnitus fade, I just decided to google "ventromedial prefrontal cortex tai chi" and see what came up. Because I believe tai chi definitely rewires areas of the brain.

      Well, voila! The following article (which I am not vouching for or against - just gave it a cursory read) talks about both tai chi and the VPC. So if we're thinking of affecting the brain via potential methods, this just rings the tai chi bell for me again.

      When I am more awake, I'd like to look at the other results from this search.


      https://www.psychologytoday.com/blog/body-sense/200908/embodied-exercise
       
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    11. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      @Path Maker I'm interested in your findings. I just signed up for Hatha Yoga because I've read similar effects to the brain. Plus, it's supposed to help with correct posture and skillful movement which could also be a factor in tinnitus.
       
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    12. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
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    13. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      Thanks for posting the Mayo link, @Ears Hurt . I just read it all! :)

      I think the yoga will be helpful too.

      From a simple, straightforward viewpoint, we have the ability to generate new neural connections and do so all the time! Just learning something new (from the simple to the complex) adds more connections, and we all do this, every day. Think about driving somewhere new, the first time, and then by the fifth time you don't even need to think hard about the directions and landmarks anymore, because you've got it inlaid in your brain.

      So it makes sense to me that following a body-based practice, which affects not only the muscles, postural control, breathing, etc., but also enhances cognitive focus, and creates a rich network of new and then daily reinforced neural pathways, could help to mitigate/reduce/abolish tinnitus. Because these body-based practices work to promote a calm nervous system and body, and tinnitus draws its strength from hyperexcitability and stress. So perhaps the overlay and integration of the calm/stress-reduction/relaxation system into our neurological functioning contributes to the mitigation/suppression of the tinnitus.

      Regardless of "how" it "may" work, I know this: if it DOES work, well, then, YIPPEE!!! :) :) :)

      In any case, the positive results in health from just eight tai chi classes I've taken will cause me to continue for life. It's fun and it's interesting and it has already made me sense that a deeper kind of peace is just waiting to be invited in.
       
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    14. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      @Path Maker I agree. The body based practices do help with being more calm. Lets hope it does work. I am all for building new neural connections. I know my tinnitus does seem less noticeable in class; however, I don't know if this is because I am not super focused on it.

      I also remember reading something about EFT (Emotional Freedom Tech.) This is also supposed to help with rebuilding neural connections. Does anyone have any information on using EFT?
       
    15. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      @Ears Hurt I don't know anything about EFT but will search it out.

      And about the tinnitus being less noticeable during your class, well, that's great. I think that whatever we can calmly focus on (meaning without this sense of forced pressure, as in, "I MUST relax to make the tinnitus go away!!!" which is actually counterproductive) is a good thing! If it's less noticeable, it means that our brains/bodies are engaging in something that interests and pleases us. Good positive messages to send to the brain!
       
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    16. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      @Path Maker I'll try to do some research on EFT as well. I do know it is about letting go of negative thoughts. We all have negative thoughts from tinnitus. Perhaps, this is what is impacting our brain to keep the tinnitus going. We feed it with stress and anxiety. They say most people that are bothered by tinnitus are emotionally different than people not impacted. I don't know how true that is but worth exploring.

      Sounds like we all need a doctor to prescribe us a trip to tinnitus island, where we can all relax and get rid of counter productivity in our damaged brains with zero stress.
       
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    17. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      Any island will do!! :) :) :)
       
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    18. monacco

      monacco Member

      Location:
      forte Antoine .monaco
      Tinnitus Since:
      29/09/2015
      Cause of Tinnitus:
      anknown
      Hi Steve is yoga your project that you want?
       
    19. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Well, anything really that will work with the problem at hand. If Yoga or Tai Chi or anything has been shown to build grey matter in the vmPFC then that's what we should research and try out.

      Yes, that's been shown in some research http://www.sciencedirect.com/science/article/pii/S0022399913003358

      Although I do strongly object to being termed as neurotic, the research showed that bothersome tinnitus is linked to neuroticism. I would tend to agree, though not in the same language, that those of us who are bothered by it or where it becomes chronic, have a certain personality trait that contributes.

      Thanks for that, a good find. I like what he has to say around the combination of treatments.
       
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    20. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      Yeah, I disagree with the term "neuroticism" too! Let me spew why :)! Throughout history, those who differ and do not conform get called all sorts of debasing terms. Here are some better terms that could fall under the wrongful term of neuroticism:

      creative, super-focused, endlessly curious, inventive, energetic, exquisitely sensitive, deeply perceptive, beautifully attuned, emotionally profound

      Please feel free to add more lovely terms to this salad!

      Some of the most "high-wired" people see the world in beautifully brilliant ways (and I'm not only talking narrowly in terms of artists and artistic success or inventors or etc.).

      I work with children with special needs and one of them once said to me, when standing next to the radiator when it started to send warm currents into the room, "The heater is breathing."

      This is the kind of wiring I'm talking about.

      And some people have a non-disabling form of OCD which actually helps them to intensely create all sorts of excellence and beauty in this world.

      I find people get labeled as "neurotic" by those who ... DON'T GET IT. By those who would have said to that child, "No silly! Radiators can't breathe!"

      So glad that kid was with me that day, and instead got to hear my take on it: "That's so true, honey! It's breathing! And YOU have an incredible way of seeing!"
       
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    21. bill 112
      Studious

      bill 112 Member

      Location:
      Republic Of Ireland
      Tinnitus Since:
      02/2012
      Cause of Tinnitus:
      Noise exposure
      Sign me up 100%!Great idea by the way!
       
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    22. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      So for those of us doing the body based practices, like yoga, tai chi, and other, how should we keep track of our changes or findings? Do you have any criteria we should be using? Or should be just report back periodically on findings with doing those practices?
       
    23. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      @Path Maker I found this great explanation for EFT. Research has also shown to generate new neural connections. It would be interesting to get a group to do yoga and tai chi and another group to do EFT.

      http://eft.mercola.com/
       
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    24. Steve H
      Creative

      Steve H Director Staff Benefactor Team Trobalt Team Tech Team Awareness Team Research

      Location:
      York, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      That's something to set up.

      First step is to look at the existing research and see if there is definitely a link between some of the body based practices and an increase in this specific region. Then we can design some monitoring procedures to check up on the tinnitus (luckily I have a few friendly research contacts who can help to make sure this is all done to best effect).

      First step for me is to find out what our research questions are.

      First research question (not short :D), based on what we're discussing, is:

      Tinnitus patients have been shown to have decreased grey matter in the ventromedial prefrontal cortex. Can training through body-based exercises build this region and reduce the impact of tinnitus?

      Who knows, if we research a little more, maybe there are better and already researched things that have been shown to build the grey matter there?
       
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    25. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
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    26. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
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    27. Sparkle92

      Sparkle92 Member

      Tinnitus Since:
      11/16, constant since 3/1/16
      Cause of Tinnitus:
      Virus, Allergies, TMJ, Stress
      I am currently getting acupuncture treatments done and the acupuncturist I see recommended I take tai chi classes. I am looking for some in my area so I can start. I have done a lot of research on tai chi as well and think it is well worth trying. I will report my own findings on the subject and any results!
       
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    28. Sparkle92

      Sparkle92 Member

      Tinnitus Since:
      11/16, constant since 3/1/16
      Cause of Tinnitus:
      Virus, Allergies, TMJ, Stress
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    29. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
      A bit of one of the articles that @Ears Hurt posted above. The whole article explains the benefits of meditation in regards to the brain structures very well and is worth the entire read. I just took out this excerpt as a little enticement. @Ears Hurt , you posted many great links! Thank you!!! :) @Mario martz @bill 112 tagging you guys because I think you'll be interested in this whole article!



      https://www.psychologytoday.com/blog/use-your-mind-change-your-brain/201305/is-your-brain-meditation



      The Brain Without Meditation – Stuck on Me

      If you were to look at people’s brains before they began a meditation practice, you would likely see strong neural connections within the Me Center and between the Me Center and the bodily sensation/fear centers of the brain. This means that whenever you feel anxious, scared or have a sensation in your body (e.g., a tingling, pain, itching, whatever), you are far more likely to assume that there is a problem (related to you or your safety). This is precisely because the Me Center is processing the bulk of the information. What's more, this over-reliance on the Me Center explains how it is that we often get stuck in repeating loops of thought about our life, mistakes we made, how people feel about us, our bodies (e.g., “I’ve had this pain before, does this mean something serious is going on?) and so on.

      Why is the Me Center allowed to process information this way, essentially unabated? The reason this happens, in part, is because the Assessment Center’s connection to the Me Center is relatively weak. If the Assessment Center was working at a higher capacity, it would modulate the excessive activity of the vmPFC (the part that takes things personally) and enhance the activity of the dmPFC (the part involved in understanding other’s thoughts and feelings). This would lead us to take in all the relevant information, discard erroneous data (that the Me Center might want to focus on exclusively) and view whatever is happening from a more balanced perspective – essentially decreasing the overthinking, ruminating and worrying that the Me Center is famous for promulgating. One helpful way to think of the Assessment Center is as a sort of “brake” for the unhelpful parts of the Me Center.


      The Brain on Meditation – I Can See Clearly Now
      In contrast, if you meditate on a regular basis, several positive things happen. First, the strong, tightly held connection between the Me Center (specifically the unhelpful vmPFC) and the bodily sensation/fear centers begins to break down. As this connection withers, you will no longer assume that a bodily sensation or momentary feeling of fear means something is wrong with you or that you are the problem! This explains, in part, why anxiety decreases the more you meditate – it’s because the neural paths that link those upsetting sensations to the Me Center are decreasing. Said another way, your ability to ignore sensations of anxiety is enhanced as you begin to break that connection between the unhelpful parts of the Me Center and the bodily sensation/fear centers. As a result, you are more readily able to see those sensations for what they are and not respond as strongly to them (thanks to your strengthened Assessment Center).

      Second, a heftier, healthier connection forms between the Assessment Center and bodily sensation/fear centers. This means that when you experience a bodily sensation or something potentially dangerous or upsetting, you are able to look at it from a more rational perspective (rather than automatically reacting and assuming it has something to do with you). For example, when you experience pain, rather than becoming anxious and assuming it means something is wrong with you, you can watch the pain rise and fall without becoming ensnared in a story about what it might mean.
       
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    30. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      acoustic
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