Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Feb 7, 2018.

    1. Pleasure_Paulie

      Pleasure_Paulie Member

      Location:
      Australia
      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Noise or maybe... unicorns!
      How many hours a day do you spend at the gym, Steve? haha
       
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    2. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      How many friends do you have with severe tinnitus?
       
    3. coffee_girl
      Innocent

      coffee_girl Member Benefactor

      Tinnitus Since:
      All my life, but got worse 2016
      Cause of Tinnitus:
      Noise induced / Concert
      3... They say it's severe and they went through the process but they weren't approved. But then again I live in California and our systems are super clogged up so those could be the reasons too.
       
    4. Soren

      Soren Member Benefactor

      Location:
      Denmark
      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Loud sound
      How long is “not far from going to market” time wise for the bimodal stimulation device (Neuromod)?
       
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    5. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Thank you for the video and taking the time to do it! Much appreciated and great work!
       
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    6. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      :D I like food a lot, so by consequence I also like to keep fit.

      They said it's likely to be end of this year / early next year for Europe launch.
       
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    7. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      That quickly? Is this similar to the Susan Shore's model?

      I don't think I heard about another machine besides the Susan Shore one and the University of Minnesota one that @kelpiemsp is taking place in.

      Is there a website for this organization?
       
    8. Hazel
      Dreaming

      Hazel Director Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      I believe they said launching in Ireland first, then the rest of Europe, and then beyond (US and ??).

      Yes, it is similar to Susan Shore's device in the sense that it also uses a technique called bimodal sensory stimulation. But while Shore's device stimulates the vagus nerve, the Neuromod device stimulates the trigeminal nerve.
       
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    9. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      Very interesting! Thank you for the response.
       
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    10. dayma
      Balanced

      dayma Member Benefactor

      Tinnitus Since:
      1/6/2018
      Cause of Tinnitus:
      UNKNOWN
      Does that mean electrical pulses into a different region?

      Also, I wanted to thank you two for the video. Good job!
       
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    11. fade2black244
      Inspired

      fade2black244 Member Benefactor

      Location:
      TX
      Tinnitus Since:
      03/24/2017
      Cause of Tinnitus:
      Noise Induced
      1. Will Neuromod require the device to be administered by a professional via office visit or will you be able to take the device(s) home and do the treatments yourself?

      2. Will you be able to own the device or will you be renting it? (if we could own, we could import it because it launches in Ireland first)

      3. Will the effect ever be permanent after consistent treatment?
       
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    12. IvanRus

      IvanRus Member

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ototoxicity
      The Neuromod device is not far from entering the market?

      It's strange that none of us knew about this design until recently.

      When did they have time to run clinical trials?
       
    13. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Check back to this thread at the beginning https://www.tinnitustalk.com/threads/mutebutton.124/. It was first talked about on Tinnitus Talk in June 2011. The device was released but they withdrew it from the market while they conducted clinical trials and refined the approach.

      In short yes.

      The stimulation part is there to promote plasticity in the brain. One of the reasons that much audio therapy is thought not to have a lasting effect is that the brain needs to be primed in some way to force or encourage plasticity.

      Our brains are ever changing across the course of our lives, always plastic. The problem with tinnitus is that it seems hard to put it back into a state of not hearing the noise. I guess that an analogy may be that it is easy to pick up a fear from a particular life event but incredibly difficult to beat the fear response. Tinnitus creates a big emotional response and the brain learns to hear it.
       
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    14. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I too agree with that. Of all the brain studies, I think this ScienceDaily article makes sense. It would explain why different types of tinnitus, severity and age can made a difference as to the brain area where one's tinnitus settles.

      In the second link which is also off to the right side of first link is an article on personalities. Mentioned in this article is "extreme traits". I believe that all with tinnitus have extreme traits which is strong limbic system response.

      https://www.sciencedaily.com/releases/2011/01/110112122504.htm

      https://www.sciencedaily.com/releases/2018/09/180917111612.htm
       
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    15. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Completely agree - for those of us with what would be called "bothersome" tinnitus. I am "habituated" mostly but even with what I term as habituation I cannot tune tinnitus out, I actively listen to it whether I want to or not. I'm sitting here now listening to it and irritated that I am. But I can't stop.

      I wonder if some of the management techniques presented and demonstrated at the expo could work a lot better with some form of stimulation that forces the brain to change. It's early days but I'm pleased to see people experimenting finally with more than one form of treatment technique.

      It may be that the therapies that the more severe amongst us would mostly get little from could actually have a real effect when combined with something else that stimulates the brain into plasticity.

      I messaged Ross of Neuromod yesterday to see if they will do a Q&A in the future, they are up for it. I couldn't answer the questions and I suspect that any interview will be after the current trial has completed.

      In general we want to do this will all sorts of professionals and researchers. At the moment we just jump on press releases but I think it will be valuable to actively seek out the people at the forefront of some of the research, and also who provide management services, to discuss their approach and how it can help people.

      Sadly there is a slight reluctance from a lot of people that we talk to. There are a band of trolls that seek out those who put their heads above the parapet and spread malicious things about them with fake (and sometimes real) accounts. They just don't understand the damage they do because it will prevent others joining the field, or stop research funding.

      The questions that we put to people at the expo (that were asked on the forum) were greeted with nerves from many. A lot have been subject to online and email abuse and they are so wary of anything they say being taken out of context. The internet has a lamentable habit of removing the human from the debate.
       
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    16. WaqasVic
      Artistic

      WaqasVic Member

      Location:
      Pakistan
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      My T is way different than all of you , ask me how
      The researchers should really take the connection between tinnitus and sleep in humans seriously, i bet it would make for a huge impact...
       
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    17. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @Steve,

      I knew a nurse therapist that used a neuromodulation device on the spinal cord area for those with a neurological disorder.

      She also taught techniques that she said would promote brain plasticity???

      One was to pretend being someone else in a different place when in bed before going to sleep.

      When I first got tinnitus before going to sleep I pretended that I was a forest ranger at a ranger's station way up in Canada.

      As weird as it sounds I guess it took my mind off myself, but for whatever reason my hearing loss tinnitus lowered a bit. I now got this physical tinnitus that changes sound when I bend my head forward.
       
    18. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      @Jack Straw, @Steve,

      I had a good chat with the lady who was hosting the Neuromod stand and she explained she was very keen approaching NICE which would be the first step in eventually making the device available through the NHS (UK). Am not sure what her role in the organisation was hence with what authority she was talking but her words were encouraging.

      The machine was sleek, white, roughly speaking the size of an iPhone 6 Plus and had an attachment to go under the tongue and earplugs to be used twice daily for 30 minutes.

      It stimulates the trigeminal nerve, as has been mentioned already, and electrical conductivity would be activated by the saliva.

      They were giving out popping candy at the stand as she explained the feeling on the tongue would be vaguely similar.

      That’s my basic understanding...

      I think she said you could travel to Ireland to get it in the first instance...
       
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    19. advocate21

      advocate21 Member

      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      unknown
      Did it look like this? This was the original Neuromod MuteButton design.

      neuromod-mutebutton.png
       
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    20. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Will the Neuromod device be a cure for tinnitus, or just give some relief, a bit like a TENS device for pain?
       
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    21. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      See attached...

      Neuromod-MuteButton-2018-Tinnitus-Expo.jpg

      Realised there is a whole thread on MuteButton... Should have posted there... oops.
       
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    22. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
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    23. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I would imagine that all the pseudoscience and quackery associated with tinnitus products doesn't make tinnitus research an attractive field for the hard sciences either.

      Unfortunately, people with tinnitus are desperate for relief and will try almost anything which just perpetuates the situation. The category needs some serious regulation.
       
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    24. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Steve and @Markku,

      I believe you have created a new nonprofit tinnitus empire that is on the brink of expanding.

      This is going to be a bigger deal than anyone realizes. The tinnitus community is going to benefit.

      I think your preparation has met your opportunity which always means success.

      Thank you. The opening video is great.

      Hazel is beautiful and you are handsome!! :p And the way you converse is very appealing to listen to.

      Congratulations!!!
       
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    25. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
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    26. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      Are all of the videos on YouTube? What channel?

      I would promote something that looks official along the following lines on Facebook:
      “Please like our videos to help spread awareness!”
       
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    27. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      The complexity is an issue. In the Q&A at the Expo, Berthold Langguth was part of the panel. A question was asked - what was the one thing you wished you knew before you started your career in tinnitus (or something similar:))

      Berthold said that he wished he had known how complicated it was. Initially he thought that he would work in tinnitus for a time, solve some problems and then move into another area. He said that tinnitus has proven to be a very difficult problem to solve, the fact that it manifests in different ways and has so many causes.

      You wonder how many people who train in auditory fields will look at it now and see how much work has gone into it for the level of understanding we currently have and think that it is too complex to get in to.

      Agree that we need some sort of regulation, although we do have regulations in place, it's just that each country has their own particular things rather than something globally to prevent bad products and scams.
       
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    28. IvanRus

      IvanRus Member

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ototoxicity
      I do not agree with that statement.

      Why do I not?

      The main reason why people have tinnitus in the 90% of cases is some type of hearing loss, usually as a result of damage to the hair cells.

      Why look for a black cat in a dark room?

      Apparently, Berthold Langguth does not understand tinnitus.

      It is necessary to understand only the neurochemistry of tinnitus. Any pathological process, like tinnitus - has a neurochemical reason.

      Only Professor Thanos Tzounopoulos is close to the truth. Or eliminating the triggering itself - restoring the hair cells.

      Frankly, I do not really believe that non-invasive devices will be effective enough. They appear to work against any logic and the bimodal stimulation devices are not based on science.
       
    29. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015

      Something David Stockdale shared with me really hits home on this which I’ll share below.

      B367F28F-A2C4-4456-B922-179F0C92B8BB.jpeg

      This is especially true for all of us amateurs reading through various studies believing we have insight about the mechanisms of tinnitus.

      Let’s face it, we know nothing and I believe that image demonstrates a powerful message that is true across all fields and disciplines. Whenever someone has true knowledge on a subject they will often say they have no idea when looking at complex issues. As Richard Feynman once said: “If you think you understand quantum mechanics, you don't understand quantum mechanics.”

      You could quite easily replace quantum mechanics with tinnitus in that quote.
       
      Last edited: Sep 22, 2018
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    30. Soren

      Soren Member Benefactor

      Location:
      Denmark
      Tinnitus Since:
      12/2017
      Cause of Tinnitus:
      Loud sound
      @Steve,
      Did Neuromod present any data from their trials with the device to back up their claims?
       
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