Tinnitus Research Initiative (TRI) 2019 Conference

Discussion in 'Research News' started by Markku, Mar 12, 2019.

    1. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @Hazel
      Very best wishes to your ma Hazel,
      Take care
      Dave x
       
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    2. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Hazel thank you. The traveling sounds so difficult and you are forging ahead for our cause. I am thinking of you and your mom who must realize how special you are. Words are hard to find and I write this as I am out of the door this morning.

      Can we donate towards Tinnitus Hub to help cover your expenses? Will have to check in later today.

      Again thinking of you. :huganimation:
       
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    3. hans799
      Mellow

      hans799 Member Benefactor

      Location:
      Hungary
      Tinnitus Since:
      Born with it
      Cause of Tinnitus:
      Worsened Dec 2016 by headphones
      @Hazel you're amazing! I hope you'll find at least a little enjoyment among the health worries and the discomfort of the trip. Wishing all the best to your mom.
       
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    4. glynis
      Feminine

      glynis Member Benefactor Ambassador Hall of Fame

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Good luck @Hazel,
      We are lucky to have you.
      Take care,
      love glynis
       
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    5. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hi Hazel,

      Sorry to hear about your mom. I sincerely hope she is on the road to recovery.

      And an extra big thank you for making such a long trip, especially at a time like this. Please know that we all appreciate the long hours Markku and yourself put into the tinnitus cause.

      Wishing you a safe trip-
      TC
       
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    6. Stu1983
      Studious

      Stu1983 Member Benefactor

      Tinnitus Since:
      Around 2008/spiked Dec 2018
      Cause of Tinnitus:
      2008 sound?Meds?Not sure/Dec 20 2018 meds doubled the volume
      Love and respect for everything you do @Hazel and @Markku, and all the others who grind for the cause.

      Sincerely,
      Stu
       
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    7. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      injury from noxious noise
      upload_2019-5-13_11-28-36.png

      The TRT status quo'ers will be attending the 2019 TRI conference and this time they are going to be spreading outdated views on hyperacusis that can result in serious maltreatments of patients.

      Tinnitus Talk's goal could be to ask them if there is a difference between pain and loudness hyperacusis and how in the world sound therapy could manage both?

      Research suggests loudness hyperacusis is related to the central gain mechanism in the auditory brain which also can cause tinnitus.

      Research suggests pain hyperacusis (noxacusis) is related to cochlear nociception and/or peripheral neuropathy.

      https://www.entandaudiologynews.com...iological-mechanisms-of-hyperacusis-an-update

      This monopoly in the field can't go on. I personally don't believe it's entirely Dr. Jastreboff's fault TRT is a monopoly in the US. It's because audiologists are just not innovative since they are too focused on selling hearing aids, and hyperacusis is rare, while noxacusis is even rarer. It's just that the field was stagnant due to the conditions being rare and Jastreboff's model went unchallenged for decades.
       
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    8. billie48
      Sunshine

      billie48 Member Benefactor Ambassador Hall of Fame

      Location:
      Canada
      Tinnitus Since:
      03/2009
      Cause of Tinnitus:
      not sure
      Thank you @Hazel and @Markku for all you do on behalf of all the members and the tinnitus community at large. Your dedication is admirable. It must be very hard for Hazel to leave her mom while she suffered a stroke. Hope she will recover gradually and be well.
       
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    9. Milky Way

      Milky Way Member

      Tinnitus Since:
      04/2004
      Cause of Tinnitus:
      Caused by stress and music as far as I know
      Heartfelt gratitude to you Hazel! May you travel safely and your mom swiftly recover.
       
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    10. Codaz

      Codaz Member

      Well IMO the hearing field is less dominant than the research field. But Jastreboff's model needs a big update.
      Simply saying that more stress is more tinnitus does not count anymore.

      Good luck @Hazel and best to your mom. There is a big interview with Dirk de Ridder in this weekend's Dutch newspaper Trouw were he also mentions Winfried Schlee.

      https://www.trouw.nl/home/bij-oorsuizen-is-de-piep-het-signaal-van-een-schattend-brein~aa1074cf/
       
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    11. Hayls32

      Hayls32 Member

      Location:
      London
      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Pulsatle to begin with. Noise exposure later in life
      Hazel, wishing your mum a speedy recovery and good health. Thank you for all of your hard work. xx
       
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    12. Cape crusader
      Cool

      Cape crusader Member

      Tinnitus Since:
      09/18/18
      Cause of Tinnitus:
      Microsuction ear wax removal
      Good luck and be safe. Thanks for trying to help us.
       
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    13. JohnFox

      JohnFox Member

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Unknown. Sudden loss of 100% hearing R ear with Tinnitus
      Great to hear you'll be there Hazel. Like you, I also have one sided hearing loss with no known origin. My hearing loss was sudden and complete, on right side with tinnitus and hyperacusis, so I am looking forward to seeing what you report following this trip.

      Godspeed!!
       
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    14. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      @Hazel
      Looking forward to your report.

      From Germany, Prof. Langguth is also there (as a speaker). He is the one who was mentioned by Neuromod when talking about collaboration with Germany. Hence, I assume that he will tell something about it.
      Susan Shore is also there as a speaker. Would be good to get the latest news.

      I am also in contact with someone from Regensburg (where Prof. Langguth) is located. If I get anything from there, I will let you know.

      Take care.
       
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    15. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      The TRI conference starts tomorrow on Friday, but ahead of that there's already today an ESIT (European School for Interdisciplinary Tinnitus Research) satellite event, where @Hazel gave a presentation on public outreach.

      hazel-tinnitus-hub-esit-1.jpg

      hazel-tinnitus-hub-esit-2.png
       
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    16. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Thank you @Hazel, this is awesome and you are so pretty!! In all my years involved with tinnitus organizations and in different arenas this is by far the most professional representation of our online community that has been ignored.

      This traveling and time you give are beyond what I can express with gratitude.

      Hope your mother is doing okay.

      Many hugs... :huganimation:
       
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    17. AUTHOR
      AUTHOR
      Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      @Hazel's second day at the TRI conference in Taipei!

      On the way to the conference arena, Hazel came across this. We don't tend to see these kinds of eight-legged monsters back home. Hazel was unfazed - I would have screamed like a little baby and ran away.

      tri-2019-tinnitus-hub-spider.jpg

      Welcome to the conference.

      tri-2019-tinnitus-hub-taipei-welcome.jpg


      Today consisted of recording interviews (on video) with almost a dozen tinnitus researchers.

      I want to highlight how much time and effort this takes. To arrange the interviews, plan for them, hire a professional video person, the actual day of shooting, the work that ensues after that, editing, publishing. We are talking hundreds of hours of work.

      tri-2019-tinnitus-hub-sarah-michiels.jpg


      Overall, the second day was a success. We are looking forward to bringing you interviews and lay-friendly summaries of what we thought were the most interesting talks/sessions and which Hazel was able to attend besides organizing the interviews. We also were able to ask some awesome ESIT/TIN-ACT PhD students to help us with attending some of the sessions and forming summaries.

      tri-2019-tinnitus-hub-hazel-raj-shakhawat.jpg


      Now, as I'm writing this, it's evening in Taipei and Hazel is currently attending the networking dinner.
      Hopefully we continue to make some new valuable connections!

      tri-2019-tinnitus-hub-networking-dinner-intro.jpg

      tri-2019-tinnitus-hub-networking-dinner.jpg
       
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    18. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Hazel is AWESOME.

      If I saw that spider I would have run screaming too.
       
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    19. SergioN

      SergioN Member

      Tinnitus Since:
      25/07/2005
      Cause of Tinnitus:
      Acoustic trauma + ototoxicity
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    20. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Excellent @Hazel!!

      Were you able to connect with Dr. Billy Martin yet? If you get the opportunity please tell him Bob and Jen in California want to say hello!

      I cannot believe how much time and money is going into this.

      I hope everyone understands how dedicated you and @Markku are!!
       
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    21. erik
      Cool

      erik Member Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012 or earlier?
      Cause of Tinnitus:
      Most likely hearing loss
      Wow I am impressed! Nice job @Hazel :)
       
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    22. Codaz

      Codaz Member

      That is professor Dirk de Ridder on the last picture. I hope @Hazel interviewed him or will do so later.

       
    23. ageoflove

      ageoflove Member

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      unknown
      @Hazel best wishes! And I hope a fast and complete recovery to your mother!

      I hope/wish there was some news concerning tinnitus research...

      Looking forward to hearing more about the conference.
       
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    24. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      @Hazel
      Do you have any further information from the conference?
      Anything about Lenire or other developments?

      Thanks and best regards.

      @Markku
       
    25. Ken219
      Frustrated

      Ken219 Member

      Location:
      New York Area
      Tinnitus Since:
      Summer of 1990
      Cause of Tinnitus:
      Noise exposure?
      Just keep donating to the cause!
       
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    26. Jiri
      No Mood

      Jiri Member Benefactor

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      noise + injury
      Thanks heaps @Hazel for travelling all the way to TRI Taiwan to help keep us up-to-date with current tinnitus research. It is much appreciated :thankyousign:
       
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    27. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Would be good to get some news from the conference.

      @Markku @Hazel

      Had an eMail exchange with someone who was there.

      The statement was:

      "Many research projects, but no breakthrough on the horizon seen for curing tinnitus".

      Regarding availability of Lenire, it seems it will take some more time (she was even talking about years). I hope this won't be true and is just a personal assumption.
       
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    28. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Well that sucks, but who knows.

      In terms of Lenire availability... what does that mean exactly? Not available in the USA or something? Surely it'll be available in Ireland?
       
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    29. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Well, yes that is a correct assessment, but also rather black and white. I prefer to think in shades of grey. If there was a big breakthrough we'd all be celebrating now. But just because there isn't one yet doesn't mean these conferences are pointless. The TRI conference might well turn out to be the very thing that leads to the breakthrough, because such events facilitate collaboration and knowledge-sharing between many different disciplines and geographies, which is much needed if we're ever going to find the cure. So while I understand your disappointment, I'm quite a bit more optimistic about the event than your acquaintance.

      We are working very hard on this, but please do keep in mind that we're just a very small group of volunteers and we have other things going on in our lives. In this case, the task is entirely on me, since I was alone at the conference, and I am also dealing with a sick mother at the moment.

      I solemnly swear that you'll get to hear plenty about the conference, but please try to be patient! It's a lot of work to put together a good conference report and I'm juggling many different things at the moment. Sorry if this seems like a rant :D
       
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    30. Daniel Lion
      Ape-like

      Daniel Lion Member Benefactor

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Wow. Hazel...

      Thank you for your hard work... and you look strong, pretty, and great.

      Take your time... take care of your mom.

      Thank you so much for helping us...

      Thank you Markku and all the people behind the scenes.

      Massive gratitude.

      Daniel
       
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      Want to get a sense of what it's like to attend the largest tinnitus research conference as a patient?
      Watch this video with our general impressions of the Tinnitus Research Initiative (TRI) conference in Taipei in May 2019.

      Read about our seven key take-aways from the TRI conference!

      Read reports from different conference sessions and learn about the topics discussed at the conference!

      Watch a mini-panel discussions between three of the TRI staff members!

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