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

[Shizune]

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.

 

[AnthonyMcDonald]

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.

 

[Shizune]

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.

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.

 

[scotty03874]

I just messaged them. I'm 20 minutes from Boston. I'm a past patient there.

 

[Bruce NH USA]

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.

 

[Jack Straw]

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.

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?".

 

[Champ]

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.

 

[Shizune]

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.

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:

First we have people do a hearing test so I play very soft sounds and see the softest point where you can hear it. Then we measure your loudness comfort range. I start where you can barely hear a sound and have you rate the loudness on a scale of 1-7 where one is very soft and seven is uncomfortably loud. I then slowly get louder until we establish where sounds become uncomfortable for you. After I have that point where things start to be uncomfortable for you, I make sure not to go louder than that level moving forward. We then do an EEG where you would wear a cap on your head with multiple electrodes that plug into that. I would play a sound in your ear that starts soft and slowly gets louder. We set the maximum loudness to be where you rated a Level 6 (loud but comfortable) during the previous loudness rating portion. While you listen to that sound, we record your brain's activity. That testing takes about 40 minutes per ear. This first part all together takes about 3 hours.

The second part of the study takes ~90 minutes and involves listening to various sounds that you might encounter in every day life over the course of a day, a week, or a year. Each sound clip lasts 6 seconds and we do the testing in two, ~20 minute chunks. As you listen to the sounds, we record various auditory nervous system measures (heart rate, pupil size, facial expressions). Your job would be to rate how you feel about those sounds. The volume of those sounds is set at an average conversational level. The lowest level we can set the sounds is ~45-55 dB HL (we use SPL for our units so the conversion to HL is a little tricky). But either way, it seems like that volume would be too much for you. However, we do have a softer volume that is an option for people who are sound sensitivity that's 10 dB below an average conversational level. However, if that softer volume isn't comfortable for you, we don't have the option to adjust the volume further I'm afraid.

The final part of the project is a bit of at home testing. This also takes ~90 minutes and is done on loaned equipment. It involves another mini hearing test, various loudness ratings (starting soft and indicating when it becomes too loud for you), and then a large number of questionnaires. We could do all the in person testing in one long 5.5 hour day and then I could give you a FedEx return shipping label for the at home testing equipment.

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.

 

[TomBradyGOAT]

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.

 

[GlennS]

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.

 

[Geatly]

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.

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.

 

[Gb3]

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.

They have another trial that would be a lot more helpful I think. It includes Lidocaine injections.

 

[TomBradyGOAT]

They have another trial that would be a lot more helpful I think. It includes Lidocaine injections.

Lidocaine patch almost worsens my tinnitus, but interesting.

 

[Bruce NH USA]

They have another trial that would be a lot more helpful I think. It includes Lidocaine injections.

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.

 

[Gb3]

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.

Yes it does require an MRI. They are trying to stabling which parts of the brain are potential targets for pharmaceuticals.

 

[Forever hopeful]

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.

 

[Gb3]

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.

Worcester MA here.

 

[Geatly]

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.

Velicna Slovakia here lol, off to America as soon as I finish my physiotherapy college.

 

[Bruce NH USA]

Worcester MA here.

New Hampshire, here!

Yes it does require an MRI. They are trying to stabling which parts of the brain are potential targets for pharmaceuticals.

I really hope their research is successful.

 

[Bruce NH USA]

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.

Hi Danielle!

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

 

[Shizune]

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.

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.

Hi Danielle!

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

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.

 

[Forever hopeful]

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.

I see Steven Rauch. He is head of the vestibular division although I do not have vestibular issues myself.

Hi Danielle!

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

No. Steven Rauch.

 

[Bruce NH USA]

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.

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.

 

[Shizune]

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.

 

[bobthebuilder]

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.

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.

 

[Forever hopeful]

Velicna Slovakia here lol, off to America as soon as I finish my physiotherapy college.

Visited Bratislava Slovakia about 4 years ago.

 

[Geatly]

Visited Bratislava Slovakia about 4 years ago.

Lovely city, living there right now, you are welcome to come visit anytime.

 

[GlennS]

I'm avoiding MRIs if at all possible so that's a nope for me.