Massachusetts Eye and Ear Institute Looking for Last Remaining Tinnitus Study Participants

Discussion in 'Research News' started by Shizune, Apr 14, 2022.

    1. Shizune
      Alone

      Shizune Member Podcast Patron Benefactor

      Location:
      The bell tower
      Tinnitus Since:
      H: 6/2020 T: 7/2020
      Cause of Tinnitus:
      Chemical inhalation+Too many sleeping drugs
      Hello all,

      I recently took a trip to MEEI for an appointment and noticed a flyer for a study.

      If you are able to travel to Boston, Massachusetts, I'd encourage you to participate. I am sadly too severe to but wanted to pass the info along.

      The study has been apparently running for a year now, though I couldn’t even find any mention of it on the Mass Eye and Ear website. They’re looking for their last few participants, but I wasn’t given an exact number or cap if any. Wrap up of data collection will be towards the end of June.

      Contact info:
      Lauer Tinnitus Research Center
      HearingRehab@meei.harvard.edu | 617 573 6001
      Research Audiologist doing this study is Jenna Sugai, AuD from the Polley Lab, she will be the one you correspond with and the one conducting the testing.

      Requirements:
      -18+ years old
      -Chronic tinnitus

      Participation will involve:
      -1-2 visits to Mass. Eye & Ear
      -Completing hearing tests and questionnaires at home
      -Financial compensation of $25/hr

      When emailing, I was told the study will consist of 3 parts:
      1. The first will involve hearing tests, loudness discomfort levels on a scale of 1-7. An EEG test with sounds in your ears playing progressively louder based on your previously measured LDLs. Overall, about 3 hours total for the first portion of the study.

      2. Second test involves playing recordings of everyday sounds while they record auditory system measures (heart rate, pupil size, facial expressions). Then you rate how you feel about the sounds. This volume is at conversational level but they can lower it by a maximum of 10db for those with more severe sensitivity, but nothing can go below 45-55 dB HL. Overall 90 mins for this part.

      3. Lastly, they will provide medical equipment for you to take home and do some testing and questionnaires remotely. Hearing test, more LDLs, and the questionnaires. After that, you can return the equipment in person or by mail.

      For those who don't want to make 2 trips to Boston the testing can be done in one 5.5 hour block if needed. Sadly, no chance of doing this at a MEEI satellite location since all the lab equipment is in Boston.

      Most Massachusetts natives know, and for those who don't, Boston is NOISY. And it sucks to get to. People use their car horns for their health, though their public transit is great if you can handle it. The whole medical hub of Boston is always rather crowded, MEEI is a bit of a labyrinth, and the elevators have very loud robo voices that announce which floor you're on, with no choice of using the stairs. I'm still recovering from my appointment 2 weeks ago. I don't wish to discourage anyone who wants to participate but I thought I should warn as well. They said they do design the studies with hyperacusis in mind but I don't think they can really account for those who are more severe, even with the -10 dB accommodation.

      The woman I spoke with also said they can do a virtual meeting with captioning for those who are more sensitive.

      Is it worth sacrificing your ears for all this? It's a way to benefit research for certain, and I wish I could participate, but I think the fallout would be too much to handle for me personally. Still hope others keep it in mind or pass it along. Though the doctors at MEEI leave a lot to be desired they seem to be at the forefront of research, and I hope that something useful can come out of this study.
       
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    2. AnthonyMcDonald
      Confused

      AnthonyMcDonald Member

      Location:
      Russia
      Tinnitus Since:
      06/2021
      Cause of Tinnitus:
      Noise induced
      I honestly don't think anyone with hyperacusis or severe tinnitus will sign up to have sound blasted in their ears for 5 hours. But maybe some other more mild people might participate.
       
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    3. AUTHOR
      AUTHOR
      Shizune
      Alone

      Shizune Member Podcast Patron Benefactor

      Location:
      The bell tower
      Tinnitus Since:
      H: 6/2020 T: 7/2020
      Cause of Tinnitus:
      Chemical inhalation+Too many sleeping drugs
      Yes and not to mention the very real risk of worsening. I did express this to the researcher, just saying how severe sufferers are an important part of research but rarely can participate in these studies. But these parameters unfortunately do exist for a reason. I at least wish that they had remote options to go to MEEI satellite locations. I wouldn't mind taking one for the team if that were the case. But traveling for over an hour + Boston's noise + the noise from testing? No thanks. Too severe as is.

      They seem to have had good luck getting participants but wanted to inform people here just in case anyone decided. If anything we can be hopeful for any of the data that comes from it.
       
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    4. scotty03874

      scotty03874 Member

      Location:
      Boston / Miami Beach
      Tinnitus Since:
      04/2019
      Cause of Tinnitus:
      Slap to the ear / Leading to more issues
      I just messaged them. I'm 20 minutes from Boston. I'm a past patient there.
       
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    5. Bruce NH USA

      Bruce NH USA Member Benefactor

      Location:
      New Hampshire, United States
      Tinnitus Since:
      1981; intolerable since 11/2021
      Cause of Tinnitus:
      Loud music, then ototoxic drug (Paxil)
      I actually applied for this trial, but was denied, due to the fact that my scores on the questionnaires were too high, indicating I was too affected by my tinnitus.

      Jenna is a terrific person, and has tinnitus, herself. She was a terrific resource for me in directing me to other people who can help treat my condition.
       
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    6. 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
      So they are going to torture the patient for 3 hours and ask them how they feel? I can save them some time and money and let them know the results without running the trial. XD

      I don't understand why we waste money on psychological research regarding tinnitus. It is a dead horse that has been studied way too much. We need actual treatment or cures, not "does tinnitus make you feel bad?".
       
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    7. Champ
      Woot

      Champ Member Benefactor

      Location:
      Boston, MA
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      Acoustic trauma from headphones
      I live 20 minutes from Boston but personally I would not want to participate in this study. 3 hours of noise where you rate how discomforting the sound levels are sounds bad to me.
       
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    8. AUTHOR
      AUTHOR
      Shizune
      Alone

      Shizune Member Podcast Patron Benefactor

      Location:
      The bell tower
      Tinnitus Since:
      H: 6/2020 T: 7/2020
      Cause of Tinnitus:
      Chemical inhalation+Too many sleeping drugs
      Not sure if this means much but I phrased my original post on that a bit poorly.

      You aren't testing the LDLs at each level for the entire portion of the testing. Rather they are giving you LDL testing in the beginning stage and then based on the number that you give as your cap off, they base the testing on that. And then the 45-55 dB HL for the second portion. Here's the exact email below:
      And I don't want to argue with anyone, I understand the frustrations, but without research, there are no cures. I know the "ask how you feel about sound" and brain scan stuff sounds a bit dubious but it's gotta start somewhere. I want to think that MEEI is trying to move in the right direction, based on their other research going on right now. Maybe I'm being optimistic though.
       
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    9. TomBradyGOAT

      TomBradyGOAT Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Who knows
      I mean I might think about it. What is the end goal of the research? What are they trying to figure out?

      I live in Maine but work for a company in Massachusetts.

      Funny enough, my company's headquarters are in the same building as Decibel Therapeutics. I just want to knock on the door and say hello, anyone there.

      I do have this weird thing where if I go to a movie for 3 hours, when I come out, I have no tinnitus, for the rest of the day. Happened during Batman and Spider-Man. Maybe I should become a movie reviewer.
       
    10. GlennS

      GlennS Member Podcast Patron Hall of Fame

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      Loud music
      I work in Boston and could easily participate but I am wondering what benefit this research will make... If it were an actual treatment then it would be worth it to me.
       
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    11. Geatly

      Geatly Member

      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Noise induced, by jackhammering into concrete on constructio
      Lol, go there, knock them on the door and tell them to hurry up, because someone living in Slovakia believes the genetic approach will be the most effective.
       
    12. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      They have another trial that would be a lot more helpful I think. It includes Lidocaine injections.
       
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    13. TomBradyGOAT

      TomBradyGOAT Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Who knows
      Lidocaine patch almost worsens my tinnitus, but interesting.
       
    14. Bruce NH USA

      Bruce NH USA Member Benefactor

      Location:
      New Hampshire, United States
      Tinnitus Since:
      1981; intolerable since 11/2021
      Cause of Tinnitus:
      Loud music, then ototoxic drug (Paxil)
      If not mistaken, that other trial involves MRIs to look at how the Lidocaine affects the brain. You also can't be on any ADs, either.
       
    15. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      Yes it does require an MRI. They are trying to stabling which parts of the brain are potential targets for pharmaceuticals.
       
    16. Forever hopeful
      Depressed

      Forever hopeful Member

      Location:
      USA
      Tinnitus Since:
      2015 resolved, 4/20 L ear, increase 2/21
      Cause of Tinnitus:
      2015,noise,2020-21 SNHL
      I hope they get their participants.

      I didn’t realize how many Bostonians/Mass folks are on here. I am right outside of Boston. My otologist is out of MEEI.
       
    17. Gb3

      Gb3 Member

      Tinnitus Since:
      12/19
      Cause of Tinnitus:
      Sshl
      Worcester MA here.
       
    18. Geatly

      Geatly Member

      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Noise induced, by jackhammering into concrete on constructio
      Velicna Slovakia here lol, off to America as soon as I finish my physiotherapy college.
       
    19. Bruce NH USA

      Bruce NH USA Member Benefactor

      Location:
      New Hampshire, United States
      Tinnitus Since:
      1981; intolerable since 11/2021
      Cause of Tinnitus:
      Loud music, then ototoxic drug (Paxil)
      New Hampshire, here!
      I really hope their research is successful.
       
    20. Bruce NH USA

      Bruce NH USA Member Benefactor

      Location:
      New Hampshire, United States
      Tinnitus Since:
      1981; intolerable since 11/2021
      Cause of Tinnitus:
      Loud music, then ototoxic drug (Paxil)
      Hi Danielle!

      I have seen Noah Siegel and Kenneth Grundfast. Nice gentlemen, but no solutions, of course...
       
    21. AUTHOR
      AUTHOR
      Shizune
      Alone

      Shizune Member Podcast Patron Benefactor

      Location:
      The bell tower
      Tinnitus Since:
      H: 6/2020 T: 7/2020
      Cause of Tinnitus:
      Chemical inhalation+Too many sleeping drugs
      Who do you see there? I wanted to give Elliott Kozin a try next because he researches traumatic brain injuries and might be more relevant to my specific case. So far the people I have seen haven't been the most communicative. My issues are more hyperacusis related instead of tinnitus so it's been hard to find a doc to take me seriously so far.
      Kenneth Grundfast was also recommended to me. Good to hear he was kind, but yes I assume it's just habituation recommendations?

      Also to the people who are hesitant to participate without an end goal, you can always email the woman I mentioned and ask. I still think that it's worth to participate in research if the testing won't set you back too much. The more people who take on the "what's in it for me" attitude, the less data we'll have. Even if you may think the research or studies are redundant, it may still be worth looking into if you're close by and able to.
       
    22. Forever hopeful
      Depressed

      Forever hopeful Member

      Location:
      USA
      Tinnitus Since:
      2015 resolved, 4/20 L ear, increase 2/21
      Cause of Tinnitus:
      2015,noise,2020-21 SNHL
      I see Steven Rauch. He is head of the vestibular division although I do not have vestibular issues myself.
      No. Steven Rauch.
       
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    23. Bruce NH USA

      Bruce NH USA Member Benefactor

      Location:
      New Hampshire, United States
      Tinnitus Since:
      1981; intolerable since 11/2021
      Cause of Tinnitus:
      Loud music, then ototoxic drug (Paxil)
      Dr. Grundfast is a nice guy and spends a fair amount of time with each patient, which is great.

      But no one has any answers, it seems, so yes habituation is the end goal.
       
      • Helpful Helpful x 1
    24. AUTHOR
      AUTHOR
      Shizune
      Alone

      Shizune Member Podcast Patron Benefactor

      Location:
      The bell tower
      Tinnitus Since:
      H: 6/2020 T: 7/2020
      Cause of Tinnitus:
      Chemical inhalation+Too many sleeping drugs
      I've received another email response to some questions.

      It seems the end goal for the study is to identify potential neural biomarkers for tinnitus and hyperacusis. That's why questionnaires are being paired with the things like the EEG, to see if they can measure anything in the brain, since patient word through questionnaires alone aren't very reliable. It's just to find a metric to see if future treatments are actually working. So, I'd say it's a step in a good direction, even if it's not for a particular drug or device.

      Also, I am told as part of the inclusion criteria, participants do need to have normal hearing through low to mid pitches, no significant hearing loss. There is a screening process for this to rule this and severity levels out.

      She did leave off saying that she does not want people who are greatly affected by such testing methods to participate because of the risk of worsening, and of course those who are too severe shouldn't bother risking it either. Leaves a good portion of sufferers out, but understandable. So I guess go for it if you are eager to participate, have no hearing loss, and aren't too severe.

      As previously mentioned, the researcher has tinnitus too so she definitely understands the frustrations of research and the very real risks of worsening through this kind of thing.
       
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    25. bobthebuilder
      Tired

      bobthebuilder Member Benefactor

      Location:
      northeast US
      Tinnitus Since:
      03/2015
      Cause of Tinnitus:
      amitriptyline, stress, sleep dep, ptsd (?)
      Same experience here. I was initially disappointed to not be able to participate but actually now thankful they did this kind of screening. Not worth risking pushing someone over the edge if their tinnitus is already catastrophic and the study accidentally makes it worse. I know someone who tried experimental tDCS for tinnitus that made it way worse. He was already in bad shape... now after the tDCS is nearly suicidal.
       
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    26. Forever hopeful
      Depressed

      Forever hopeful Member

      Location:
      USA
      Tinnitus Since:
      2015 resolved, 4/20 L ear, increase 2/21
      Cause of Tinnitus:
      2015,noise,2020-21 SNHL
      Visited Bratislava Slovakia about 4 years ago.
       
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    27. Geatly

      Geatly Member

      Tinnitus Since:
      12/2021
      Cause of Tinnitus:
      Noise induced, by jackhammering into concrete on constructio
      Lovely city, living there right now, you are welcome to come visit anytime.
       
      • Like Like x 1
    28. GlennS

      GlennS Member Podcast Patron Hall of Fame

      Tinnitus Since:
      1992
      Cause of Tinnitus:
      Loud music
      I'm avoiding MRIs if at all possible so that's a nope for me.
       
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