University of Minnesota Tinnitus Research with Acoustic and Body Stimulation

Discussion in 'Research News' started by kelpiemsp, Apr 2, 2018.

    1. Jack Straw
      Balanced

      Jack Straw Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      We suspect he has signed an NDA, which inhibits his ability to talk about it. He is a very nice guy and wouldn’t purposefully be ignoring this thread and not sharing information.
       
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    2. hans799
      Mellow

      hans799 Member Benefactor

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      Yes, I think he's doing all he can.
       
      • Agree Agree x 1
    3. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      It is great news!
       
      • Agree Agree x 3
    4. Adriel93

      Adriel93 Member

      Location:
      Chicago
      Tinnitus Since:
      10/22/2016
      Cause of Tinnitus:
      Allergies
      What if he’s trolling us??? :(
       
      • Agree Agree x 1
    5. PDodge
      Cowboy

      PDodge Member Benefactor

      Location:
      Woods of Alberta
      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Bear ate my Cochlea
      I get the feeling he's not the type of guy to f$%# with a bunch of T sufferers.
       
      • Agree Agree x 1
    6. duder12

      duder12 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      High Frequency Hearing Loss
      Why on Earth are you saying I have Meniere's disease?

      What? Meniere's is typically low frequency hearing loss and vertigo which I have neither of.

      I have no idea why you are saying I have Meniere's. My post said nothing of sort.

      The trial didn't work for me. Doesn't mean others didn't have success but I don't have much else to say.

      Edit: Nevermind I see now. You are all looking through my post history. Yes a year ago i wrote my doctor thought I have Meniere's. It wasnt a diagnosis. He sent me on to a vestibular therapist and an ENT who both verified I do not have Meniere's. Most of the prior symptoms I wrote about were nothing but anxiety that I caused myself.
       
      Last edited: Jan 10, 2019
      • Informative Informative x 1
    7. MarkLud

      MarkLud Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      Noise/music/unknown
      Not meaning to jump in, all due respect, and I'm terribly sorry the trial didn't help you ... that really sucks ... but it does say under your name in the box on the left that your "cause of tinnitus" is Meniere's. So I'm sure that's where they thought that was the case.
       
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    8. MarkLud

      MarkLud Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      Noise/music/unknown
      Last post aside, it feels like we're closer than freaking ever to finally getting some relief. Is there ANYTHING we can do to help speed along this Minnesota process? Try and find some wealthy donors to help out? GoFundMe to raise additional money? Anything? I thought I remember reading that it was going to take like another year longer than expected because they didn't have enough resources/workers or whatever to do certain parts of the trial concurrently.

      Mine's gotten so much worse over the past four months, sleep near impossible, getting desperate like a lot of us. And it feels like we're so darn close to some relief.
       
      • Agree Agree x 1
    9. MarkLud

      MarkLud Member

      Tinnitus Since:
      11/2015
      Cause of Tinnitus:
      Noise/music/unknown
      Sorry for three posts in a row but it won't let me edit the last one for some reason. I think I was mistaken and thinking of the Michigan trial with the not enough resources part.

      But for my follow-up -- it is confusing with these three different ones going on and trials and expected dates and whatnot. What's the latest as far as where this is on the timeline to come out? Is another trial needed or is this it, etc., etc., any preliminary date estimates? It's all so exciting AND confusing, lol.
       
    10. PDodge
      Cowboy

      PDodge Member Benefactor

      Location:
      Woods of Alberta
      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Bear ate my Cochlea
      Is it possible you got the sham? Also under your 'cause of tinnitus' it says menieres
       
    11. Snake
      Scared

      Snake Member

      Tinnitus Since:
      08/2011
      Cause of Tinnitus:
      Long term playing computer games on headphones.
      @duder12 Maybe you were in placebo group? Or got timing that doesn't work?

      I remember that they are trying different timings during that trial, some work a little, some work a lot and some doesn't work at all.
       
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    12. AliceW

      AliceW Member

      Location:
      France
      Tinnitus Since:
      02/2017
      Cause of Tinnitus:
      Acoustic trauma - loud noise
      @duder12 I’m agree with Snake. You were perhap’s in placebo group..
       
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    13. GlennS

      GlennS Member

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      Loud music
      THIS.

      There are a lot of variables in this treatment.

      -The site of the electrical stimulation
      -The amount of electrical stimulation
      -The timing of the electrical stimulation
      -The nature of the sound
      -The duration of the treatment (both per session and overall)

      This is new technology and people here are trying to draw final conclusions already.

      If I were to try one of these treatments at this early stage and it didn't work for me I don't think I'd write it off. I'd try one of the others or retry later if they made changes.
       
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    14. duder12

      duder12 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      High Frequency Hearing Loss
      Shit sorry. I had no idea it said that. I fixed it so it says hearing loss.
       
      • Like Like x 1
    15. duder12

      duder12 Member

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      High Frequency Hearing Loss
      No one is writing the treatment off that isnt being over dramatic.

      I was in sessions since like June through December logging every single day. My tinnitus varies but I just didn't notice any variations due to the sessions. If anything they irritated my tinnitus more often than I felt they helped.

      I'm just saying it never felt like it did anything for me after many sessions. Maybe it did and I just don't know it but that certainly doesn't mean it didn't help other people.

      Maybe I was in a placebo but I don't see why they would have me be placebo the entire time when they can easily change that session to session without me having a clue. I don't see a reason why they would keep it that way the entire trial but who knows. People shouldn't just assume I was because my experience wasn't positive.

      Lastly, I think my experience should be a good wake up call for people. The best treatment for tinnitus is to try and get on with your lives and stop obsessing over forums. Watching these threads for years impatientely waiting for your chance at the treatment is going to be nothing but devestating for you if you finally try it and it doesn't meet your expectations.

      My tinnitus is horrible but every month I get better at it. It's much better now than it was before I started the treatment. Why? Because time has allowed my tinnitus anxiety to heal. If anything its louder than ever but I am 10x better at accepting it and ignoring it because I finally let go of my anxiety over it.

      If I get more info from the trial that contradicts anything I said or let's me know I didn't receive the real treatment I will certainly let this thread know. I just have zero expectations after experiencing the trial so have moved on personally.

      Sorry to disappoint but sometimes it's better to be real than fake optimism.
       
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    16. hans799
      Mellow

      hans799 Member Benefactor

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      I am sorry that the trial didn't work for you. I hope that another machine, after they learned more and tuned it better, will.

      However I'd like to remind everyone that Neuromod's trial (which was a device very similar to this one) also had 20% nonresponders. The reason to be optimistic about these machines remains unchanged. Based on what information we have available, they do work for the vast majority, though unfortunately not everyone.
       
      • Agree Agree x 3
    17. Jim51042

      Jim51042 Member

      Tinnitus Since:
      3/28/16
      Cause of Tinnitus:
      Headphone use
      Why you might think that's the best approach the term treatment is being misappropriated. That approach is best characterized as a behavior adaption.

      Part of life is trying things out and see if they work. If you not emotional able or emotional prepared to handle lack of success then you're not going to be able to grow and discover in life.
       
    18. Adriel93

      Adriel93 Member

      Location:
      Chicago
      Tinnitus Since:
      10/22/2016
      Cause of Tinnitus:
      Allergies
      @kelpiemsp I wish you could write us back man.
       
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    19. Philip83
      Jaded

      Philip83 Member Benefactor

      Location:
      Swede living in Austria
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Noise trauma from loud moped (2001) Noise blast (2014)
      Sorry, what is the story here? I missed it.
       
    20. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      He was part of the trial, reported a reduction in volume and recently updated his status that he is hearing silence for the first time in 31 years.
       
    21. Philip83
      Jaded

      Philip83 Member Benefactor

      Location:
      Swede living in Austria
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Noise trauma from loud moped (2001) Noise blast (2014)
      Crazy!
       
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    22. Paulmanlike

      Paulmanlike Member Hall of Fame

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      Noise
      He’s not the only one.

      @Clare B had complete elimination of tinnitus in the Neuromod (MuteButton) study.
       
    23. Philip83
      Jaded

      Philip83 Member Benefactor

      Location:
      Swede living in Austria
      Tinnitus Since:
      2001
      Cause of Tinnitus:
      Noise trauma from loud moped (2001) Noise blast (2014)
    24. Stakovic

      Stakovic Member

      Tinnitus Since:
      1998
      Cause of Tinnitus:
      Unknown
      And since he heard the silence he became quiet :D
       
    25. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      And hasn't come back to report. sigh
       
    26. PDodge
      Cowboy

      PDodge Member Benefactor

      Location:
      Woods of Alberta
      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Bear ate my Cochlea
      He's too busy smiling
       
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    27. Adriel93

      Adriel93 Member

      Location:
      Chicago
      Tinnitus Since:
      10/22/2016
      Cause of Tinnitus:
      Allergies
      To be honest I feel like @kelpiemsp was trolling us.... I tried to contact the email that the page gives to write to and it’s an invalid email address..... smh
       
    28. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      This, despite him browsing this site earlier today.
      I hope he at least confirms that he was serious when he wrote the latest post on his profile.
       
      • Like Like x 2
    29. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      Wow, wish he would have said something.... Not sure what to think. Because if he can't talk then that's what he should tell us. The wait continues....the ringing continues. Dear Lord....
       
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    30. Bambam0
      Cool

      Bambam0 Member Podcast Patron Benefactor

      Tinnitus Since:
      2/2018
      Cause of Tinnitus:
      Rock N Roll
      I've noticed he's been signed in many times when I've checked this thread. He must not be able to talk about it...

      Right @kelpiemsp ?
       
      • Good Question Good Question x 1

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