Hyperacusis Hybrid Device: A Clinical Trial for Hyperacusis Patients (University of South Florida)

Discussion in 'Support' started by lymebite, Oct 3, 2019.

    1. lymebite
      Vegged out

      lymebite Member Podcast Patron Benefactor

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      The University of South Florida is now recruiting participants for a clinical trial for hyperacusis.

      See full details with the flyer image below. Apparently they are having difficulty recruiting enough people to participate, so if you live in Florida and have hyperacusis, please consider signing up!


      USF-Clinical-Trial.jpg
       
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    2. Autumnly
      Wishful

      Autumnly Member Benefactor Hall of Fame

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      From twitter:

      Hyperacusis patients in Florida: See about testing out the new hybrid #hyperacusis device. Details are here.

      Hyperacusis Hybrid Device
      Dr. David Eddins from the University of South Florida highlighted a key new effort Hyperacusis Research is supporting – the development of a hyperacusis hybrid device. This proposal (see description here) involves a dual device that suppresses loud noises above a certain threshold and also incorporates a sound generator for treatment. This device offers, in a single flexible instrument, a promising transitional intervention to sound-enriching therapy with loudness-suppressing compression processing that provides improved audibility and a broader dynamic range, without opposing the therapeutic effects of enriching sound therapy. The study includes a well-designed clinical trial which will be centered at the University of South Florida. Please contact us if you would like to participate and can travel to Tampa, Florida. - source
       

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    3. Badger19

      Badger19 Member

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      Sounds extremely promising for hyperacusis!
       
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    4. TheDanishGirl
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      TheDanishGirl Member Benefactor Hall of Fame

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      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      I never wished to be back in Florida more in my life, than now!

      (been there twice in the past)

      Really hope somebody will jump on this, and report back their experiences to us.
       
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    5. BuzzyBee
      Bookworm

      BuzzyBee Member Benefactor

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      I wonder if it helps with reactive tinnitus (that may or may not be hyperacusis).
       
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    6. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      This is great news. Hopefully someone who lives in Florida can enter the clinical trial.

      I wonder what the difference is between this device over WNGs.
       
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    7. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

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      I think it said it’s got a noise blocker, ”loudness suppressing compression“ feature as well as the sound therapy. So that’s pretty cool, that feature would really complement hearing aids for safety issues. Just my take on what I read.
       
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    8. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      If anyone is entering this trial can you please let us know. It would mean a lot to us.
       
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    9. RichardGuy
      Depressed

      RichardGuy Member

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      I live in St. Pete, but could definitely go. Any idea if it's still open? I can't find anything
       
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    10. AUTHOR
      AUTHOR
      lymebite
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      lymebite Member Podcast Patron Benefactor

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      The most recent news I heard was that they were having difficulty finding enough patients. Have you tried contacting USF? Phone and email are at this link.

      https://hyperacusisresearch.org/hyperacusis-device/
       
    11. RichardGuy
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      RichardGuy Member

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      Thanks! I sent an email. It would be a little tricky, seeing as I live 45 mins from the facility, but I could do it.
       
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    12. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      Keep us up to date.
       
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    13. RichardGuy
      Depressed

      RichardGuy Member

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      Florida
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      10/16/17, At Age 20
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      I got a response back on the 6th and immediately replied saying I would be glad to make the repeated drives for the testing. However that was Wednesday morning. Still no response.
       
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    14. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      Thanks for the update and good luck.
       
    15. victoria9273
      Amused

      victoria9273 Member

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      This sounds so promising and well-informed. If I were in Florida I would definitely go.
       
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    16. RichardGuy
      Depressed

      RichardGuy Member

      Location:
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      Seems as though they are taking their sweet ass time for a reply. 4 days from initial inquiry, then already 4 days from my response and still waiting..
       
    17. RichardGuy
      Depressed

      RichardGuy Member

      Location:
      Florida
      Tinnitus Since:
      10/16/17, At Age 20
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      So 8 days later (following another email from me) this is the response I got:

      "Hello Mr . X"

      "The schedule is fairly flexible. We will need to see you at specific intervals (usually 1 month) but can work with your schedule to determine which time of day or day of the week will work for you and this may vary from one appointment to the next."

      "The treatment involves use of a multi-functional device which provides therapy sound and also serves as a sound attenuator (similar to an earplug) for sounds that you find uncomfortably loud. You will be asked to use the devices for a minimum of 8 hours per day. Please let me know what other questions I can answer for you."

      Are they legit asking me to have ear buds shoved into my ears for 8 hours a day? Potentially playing loud sounds?
       
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    18. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      I think they adjust the device based on your LDL’s. If possible maybe build it up slowly
       
    19. RichardGuy
      Depressed

      RichardGuy Member

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      Florida
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      10/16/17, At Age 20
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      I want to say yes but holy crap! 8 hours! I mean, I'm lucky as all hell because I'm a student and even six months from now I still probably will be. But how do I find the time to do that all at once?
       
    20. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      Do you know if it’s 8 hours continuously or can you spread it out during the day?
       
    21. RichardGuy
      Depressed

      RichardGuy Member

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      10/16/17, At Age 20
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      Do you guys want to ask the docs any questions? I am certain I will attend despite the issues I have outlined.
       
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    22. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      Not at the moment but appreciate you for doing the trial. I just want to see what the device looks like
       
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    23. Daniel Lion
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      Daniel Lion Member Podcast Patron Benefactor Hall of Fame

      Location:
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      Hi RichardGuy,

      Happy you are following up on this... please keep us posted on how you do.

      Best of luck, you are a champion!
       
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    24. TheDanishGirl
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      TheDanishGirl Member Benefactor Hall of Fame

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      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      You are doing all of us hyperacusis sufferes a huge favour! I wish you the best of luck. I really hope this is the answer out of this hell.

      I don't have any questions as of right now, but If I come up with any, I'll let you know.
       
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    25. RichardGuy
      Depressed

      RichardGuy Member

      Location:
      Florida
      Tinnitus Since:
      10/16/17, At Age 20
      Cause of Tinnitus:
      Acute
      To quote the doc, the devices are basically hearing aids that play continuous sounds that are set to a "comfortable" level.

      I will post again when I have an appointment booked. If you don't hear back from me within 48 hours of the appointment booking and subsequent visit something has gone wrong.

      Yes.

      My only concern is regarding the mute button/neuromodulation. According to the CEO of the device hyperacusis sufferers were the most likely to positively respond to using the device.
       
    26. RichardGuy
      Depressed

      RichardGuy Member

      Location:
      Florida
      Tinnitus Since:
      10/16/17, At Age 20
      Cause of Tinnitus:
      Acute
      It can be spread out.
       
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    27. Lucifer

      Lucifer Member Podcast Patron Benefactor Hall of Fame

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      @RichardGuy

      I reckon the hyperacusis device will be better than Lenire because it can be adjusted depending on your LDL’s. Maybe if it resolves your hyperacusis, it might help with the tinnitus as well. If not, maybe after you have tried the hyperacusis device, try out Lenire.
       
    28. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      Hmmm, that actually doesn't sound promising... Isn't that just the same as white noise generators/TRT?

      When it comes to Lenire/Neuromod I am not going to go for that. I believe subjecting myself to sounds through headphones is VERY risky, when my hyperacusis is this pronounced... and I can't "afford" the risk of making my hyperacusis worse.
       
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    29. RichardGuy
      Depressed

      RichardGuy Member

      Location:
      Florida
      Tinnitus Since:
      10/16/17, At Age 20
      Cause of Tinnitus:
      Acute
      Well, no. This isn't a tinnitus treatment, so treating hyperacusis may just be as simple as playing noise into the ears.
       
    30. TheDanishGirl
      Sad

      TheDanishGirl Member Benefactor Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      05/2017 (H since 06/2017)
      Cause of Tinnitus:
      long term noise exposure (headphones), maybe some stress.
      White noise generators are for both tinnitus and hyperacusis. It's supposed to help lower hyperacusis in some people. So that treatment already exits.
       
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