University of Minnesota Tinnitus Research with Acoustic and Body Stimulation

[Manny]

@kelpiemsp this is great news! The more treatments in development the merrier! And thank you for sharing your experience with the our "community"!
Do you get to keep/using the device after the trial is over if the device helps for you? If so, I'd be really, really keen to try and get in on one of these trials

 

[kelpiemsp]

Thanks! I really doubt I will get to keep the device, but I will get lots of opportunities to use it as the appointments are every two weeks for 12 sessions and than once a month for the final 4 treatments. My first appointment is on May 11th so stay tuned

 

[Bambam0]

Thanks! I really doubt I will get to keep the device, but I will get lots of opportunities to use it as the appointments are every two weeks for 12 sessions and than once a month for the final 4 treatments. My first appointment is on May 11th so stay tuned

Are you getting amped for this trial or what?!

 

[Spiral]

Thanks! I really doubt I will get to keep the device, but I will get lots of opportunities to use it as the appointments are every two weeks for 12 sessions and than once a month for the final 4 treatments. My first appointment is on May 11th so stay tuned

Thanks for keeping us in the loop. You are giving a lot of us hope.

 

[kelpiemsp]

Are you getting amped for this trial or what?!

I am getting very nervous that is for sure!

Thanks for keeping us in the loop. You are giving a lot of us hope.

Thanks! I don't think I will receive treatment on the first appointment on Friday. I believe that I have to do a hearing test, an EEG, and several other scans (inclusion requires hearing loss thresholds less than 50db). Then they will calibrate the device. We will see!

 

[Nina Saleh]

@kelpiemsp
Thanks for sharing this with us. Wish you all the best of luck and keep us posted please

 

[Tripstan]

@kelpiemsp I was going to try and private message you but I'm not sure how to. I live in Southern Minnesota and I've very interested in the clinical trials. I emailed them on Sunday and haven't heard anything back. Any info on contacting them or getting a response? I hope I'm not too late.

 

[kelpiemsp]

@Tripstan I sent you a pm

 

[kelpiemsp]

Ugghh 1 hour in a sound proof booth. Just finished my introductory session. I feel like I deserve a gold medal for that feat lol...

 

[Bambam0]

Ugghh 1 hour in a sound proof booth. Just finished my introductory session. I feel like I deserve a gold medal for that feat lol...

Any more you can share?!

 

[kelpiemsp]

Any more you can share?!

Sure I learned quite a few things. First, all the people in the trial are not starting at the same time, and they are confident enough in the outcomes that they have already started developing the device to take home. The participants of this trial will be eligible for the final trial, where they will take home the device to use. This should begin in early 2019. The device is like a hearing aid but works similarly to Shore's device. I learned that Shore's research is actually based off the animal findings done here at the UofM (Minnesota) and she is targeting the DCN whereas they are targeting the inferior ...something I don't remember. I also had an extended hearing frequency test done, so the device broadcasts tones customized to my hearing thresholds. It was extended both above and below. I had no hearing loss at all up to 12khz and down to 125hz I think. They mentioned some postulate the degree of the slope between frequencies rather than the sheer amount of loss was a greater predictor of tinnitus. I.E. if you had a lot of loss but it was slowly over many frequencies you are less likely to have tinnitus. The Graduate student I spoke with had tinnitus and was pursuing an audiology Ph.D. They mentioned they had just finished a paper which showed gabapentin as a successful treatment (mildly), and that there would be a major paper published shortly about the findings of the device I am trialing in Europe at some point in 2018.

The actual testing on the first day was sheer hell. I whipped out my phone and measured the sound booth at 10 db, and then had to put in ear plugs and sit there for 10 minutes. OMG. Then I had to measure loudness again after the silence. Then was the hearing test, then was the somatic tinnitus test and personal interview. All in a soundproof booth below 10 dB! I think I learned why people tell you to focus on your T, after hearing it soooo loud for an hour, it was nearly impossible to hear it in the real world. It was weird.

Hope is on the way T sufferers. Hang in there!

 

[Assthetic]

Thank you for the update!

 

[Bambam0]

Whoa man. Really interesting. Also about gabapentin. When do you get to start using the device?

 

[grate_biff]

Whoa man. Really interesting. Also about gabapentin. When do you get to start using the device?

There has been many trials with Gabapentin. All with different outcomes!

 

[kelpiemsp]

Whoa man. Really interesting. Also about gabapentin. When do you get to start using the device?

Over the next 13 sessions (26 weeks) and then the final 4 sessions will be an active vs sham trial. However, they will be calibrating it via EEG, I will also be tinnitus masking and pitch finding. However, the researchers told me people almost always don't match correctly I.E. they say they have a pure tone that never changes but the actual frequency they match is always different. Anecdotally musicians seem to be able to go directly to the note.

 

[brummygirl]

@kelpiemsp thanks so much for keeping us posted on this!

 

[threefirefour]

Over the next 13 sessions (26 weeks) and then the final 4 sessions will be an active vs sham trial. However, they will be calibrating it via EEG, I will also be tinnitus masking and pitch finding. However, the researchers told me people almost always don't match correctly I.E. they say they have a pure tone that never changes but the actual frequency they match is always different. Anecdotally musicians seem to be able to go directly to the note.

Thanks for keeping us updated. Please be sure to tell us if your tinnitus is reducing or has reduced

 

[kelpiemsp]

@threefirefour of course I will! My next session is next Friday so I should have another write up then. I will be hooked up to the EEG and will be recording my timing and learning different parameters. I am working on some tinnitus research in my free time, so if my activity here is dwindling here it is most likely a good thing. Feel free to call me out if I get behind on updates!

 

[threefirefour]

@threefirefour of course I will! My next session is next Friday so I should have another write up then. I will be hooked up to the EEG and will be recording my timing and learning different parameters. I am working on some tinnitus research in my free time, so if my activity here is dwindling here it is most likely a good thing. Feel free to call me out if I get behind on updates!

Good luck! Hopefully in 26 weeks the only time you hear your tinnitus is during a session in that chamber.

 

[duder12]

I live in Minneapolis and just emailed them. @kelpiemsp Is there anyway I can PM you I dont see an option from your profile.

 

[kelpiemsp]

I live in Minneapolis and just emailed them. @kelpiemsp Is there anyway I can PM you I dont see an option from your profile.

I'm not sure why you can't PM me but I started a conversation with you.

 

[OnceUponaTime]

@kelpiemsp Best of all. I hope this works for you and thank you for the information you are sharing with us. I pray it is a breakthrough and we can finally get a cure or at least some relief. God bless you.

 

[dgray]

@threefirefour of course I will! My next session is next Friday so I should have another write up then. I will be hooked up to the EEG and will be recording my timing and learning different parameters. I am working on some tinnitus research in my free time, so if my activity here is dwindling here it is most likely a good thing. Feel free to call me out if I get behind on updates!

Thank-you for keeping all abreast of your treatments. This gives us all hope. Best of luck and God bless -

 

[Jiri]

Hi @kelpiemsp I tried to send you a p.m. but it doesn't work for some reason. Could you p.m. pls? Thanks

 

[kelpiemsp]

Hi @kelpiemsp I tried to send you a p.m. but it doesn't work for some reason. Could you p.m. pls? Thanks

Do I have to enable PM somehow? Not sure... I tried initiating a conversation.

 

[Jiri]

Do I have to enable PM somehow? Not sure... I tried initiating a conversation.

It worked. I asked admins here multiple times about this messaging issue - I always get some type of an error whenever I try to p.m. someone.

 

[Bambam0]

How was session #2?

 

[kelpiemsp]

Hi all sorry for they delay, I was out of town for Memorial Day weekend. My session this week was delayed because of the Holiday

 

[Tripstan]

Greetings, I've also been accepted for the trials. I have my intake appointment this coming Monday morning. Wish me luck!

 

[threefirefour]

Greetings, I've also been accepted for the trials. I have my intake appointment this coming Monday morning. Wish me luck!

Congrats. Please be sure to give updates on your progress