University of Minnesota Tinnitus Research with Acoustic and Body Stimulation

[PDodge]

To be honest I feel like @kelpiemsp was trolling us.... I tried to contact the email that the page gives to write to and it's an invalid email address..... smh

Why? This isn't the first time he's reported his T going down throughout the trial

 

[Adriel93]

@PDodge he's been signed on plenty of times and he's not confirming anything. The least he could do is confirm, and to tell us he can't talk about it. He knows what is like to live with T, why is he doing this to us? @kelpiemsp

 

[kelpiemsp]

Sorry! My wife went in to prelabor and have been at the hospital. My home computer was logged in to here so it kept waking up etc. I haven't had time to look at the thread. I'm not trolling. It has slowly subsided. I will be back on in the am.

Again sorry for not getting back here.

Best,
Kelpie

 

[kelpiemsp]

Sorry for the delays! Wife is on bedrest at the moment. Hopefully the baby stays in the oven for a little longer!

I did sign an NDA. So I will provide more details on my tinnitus, and less on the outcome of the trial. The actual trial (from an NDA standpoint), only lasted the month of December.

My participation in the trial ended in Dec 2018. Honestly, I had mixed feelings about it. There had been a noticeable reduction in my tinnitus throughout the trial, and I was a little saddened to be out out of that life support. In the weeks that have followed my last trial appointment, I started mentally not caring about tinnitus.

While @Bill Bauer may call me reckless with my hearing I do/did actually use protection fairly often. For example, when vacuuming or running the coffee grinder. I first noticed that when I had my Peltors on, I wasn't super annoyed. I could hear my tinnitus a bit, but it didn't expand in the void of silence. That was an interesting change. Previously, my tinnitus would increase in volume in silence and become deafeningly loud. Painfully loud. In my journal, I quit writing about my fear of going to bed and dealing with the tinnitus. (This isn't about the habituation, just noticing its lessening impact.)

I have stopped getting fleeting tinnitus over the last month. Previously, about 3-4 times per week, I would get fleeting tinnitus. My hearing would cut out completely, I'd go deaf in an ear for a few minutes and then it would pass. This has stopped.

Loud noise distortion has stopped. I had kind of thought this was normal, and I still don't understand what was causing this? My dog has an unfortunately loud bark. It's piercing, and measures well over 100 dB. Unfortunately, I can't do anything about this at the moment. (I am paying for classes for her to stop barking). Same with kid crying. No more distortion.

While I can't hear my tinnitus at work currently, I have a small bit of residual tinnitus. When I got to bed and lay my head against the pillow it sounds like water running through pipes. I don't even know if that is considered tinnitus? It's not even in the same league as a car horn or dental drill going off in your head.

My hyperacusis slowly diminished. I had H for a while. Not anywhere close to many of the people on this forum. But there were weeks were I couldn't be in my office environment because it was too loud. Once I went back to work I slowly got used to that. Then I couldn't handle my child yelling. I slowly got used to that. Now, I protect out of instinct, but the pain doesn't happen.

A couple of caveats:

1. I have TMJ and have been seeking treatment for TMJ. WAIT HOLD YOUR HORSES. My treatment has been CBT based, so y'all can calm down.
2. I gave up caffeine. I really didn't notice this affect my tinnitus.
   
3. And then one tiny, weency, little other possibility, that I did make the researchers aware of. Benzo withdrawal. I tapered off benzos this year. I was upfront and gave the researchers my doses and how I was tapering. I was pretty much done by the time the real trial started however. I had tinnitus before Benzo's so I don't really think this played a part in it. The plus side is, I was prescribed an very large dose for a very long time. If my tinnitus reduced after this, then most of us have hope!

Anyways, sorry for the delays.

 

[Don Tinny]

@kelpiemsp

I'm confused after reading about CBT and TMJ. Was your improvement exclusively for the use of the device? Or are there other factors?

My english is basic.

Thanks and congrats anyway!

 

[dayma]

@kelpiemsp

Thanks for taking the time to post this. It was very informative. Also, PLEASE do not apologize for delays. Not everyone on here thinks they are entitled to an immediate response.

Also, good luck with the baby stuff.

 

[TomBradyGOAT]

@kelpiemsp

Thank you for the update. Be there for your wife/family of course.

 

[pochito]

Well that's awesome, thanks for your answer @kelpiemsp, it's giving hope that the bimodal neurostimulation is finally something we can take seriously. Do you think from the info we have about MuteButton that we can expect the same kind of results?

 

[MarkLud]

That is so awesome to hear, Kelpie. Thanks again for the update and soon-to-be congrats on the upcoming addition to the family. My friend's wife was due the other day and hasn't gone in yet but it's coming soon, lol.

I get if you can't answer a lot of things due to the NDA but I guess I'll ask ... if before your tinnitus was around a 7-8 out of 10 (I believe that's what you said in an old post), what would you say it is now?

Enjoy the improvement!

 

[Manny]

Thank you for your update!! @kelpiemsp

Sorry if this question seems or of place, but I'd like to ask it - do you know if you actually received the treatment, or a placebo?

Also, are there plans for an additional trial going forward?

 

[duder12]

I've noticed he's been signed in many times when I've checked this thread. He must not be able to talk about it...

Right @kelpiemsp ?

I'm in the trial. We we're never told we can't talk about it that I'm aware of.

 

[gadsie]

@kelpiemsp I think the "water running through pipes" is just bloodflow, if you mean what I think you mean.

 

[pochito]

I'm in the trial. We we're never told we can't talk about it that I'm aware of.

This is weird indeed.. why @kelpiemsp would have had to sign something and not you?

Did you guys even met there once?
Makes me wonder why you have totally different experience than him in the "same" trial.

Even if we assume you would have got into the placebo group I guess you should have signed the same papers.

 

[JohnAdams]

I'm in the trial. We we're never told we can't talk about it that I'm aware of.

The plot thickens.

 

[Philip83]

I'm in the trial. We we're never told we can't talk about it that I'm aware of.

You're in the trial, or you were in the trial? Didn't it finish?

 

[Manny]

I'm in the trial. We we're never told we can't talk about it that I'm aware of.

@duder12, were you in the December part of the trial?

I did sign an NDA. So I will provide more details on my tinnitus, and less on the outcome of the trial. The actual trial (from an NDA standpoint), only lasted the month of December.

 

[kelpiemsp]

I'm in the trial. We we're never told we can't talk about it that I'm aware of.

I'm assuming you signed the consent form? And were going to hasslemo hall? You may want to pay more attention to what you are signing.

 

[kelpiemsp]

This is weird indeed.. why @kelpiemsp would have had to sign something and not you?

Did you guys even met there once?
Makes me wonder why you have totally different experience than him in the "same" trial.

Even if we assume you would have got into the placebo group I guess you should have signed the same papers.

The actual trial was run by different graduate students, so that could explain slight differences in methodology.

 

[kelpiemsp]

Also there isn't placebo groups. Everyone was part of both groups. This was explained in the materials given to everyone.

 

[JohnAdams]

Also there isn't placebo groups. Everyone was part of both groups. This was explained in the materials given to everyone.

Isn't the point of a placebo group not to give any indication that you're actually in a different group?

 

[kelpiemsp]

Isn't the point of a placebo group not to give any indication that you're actually in a different group?

Yes, and that was maintained. Fee free to reread this thread where I explained it all in detail.

 

[Adriel93]

@kelpiemsp are you still sensitive to sounds, now that you got rid of tinnitus?

 

[kelpiemsp]

@kelpiemsp are you still sensitive to sounds, now that you got rid of tinnitus?

No that stopped a while ago. Probably in October.

 

[Adriel93]

@kelpiemsp did it go away on its own, or did it go away from the device???

 

[AliceW]

@kelpiemsp did you have real hyperacusis every day before trying the device? What kind of sensation did you feel in your ears with noises and what kind of noises were painful?

 

[Paulmanlike]

Does this treatment being investigated supposedly treat hyperacusis as well as tinnitus?

 

[PDodge]

Thanks for the update!

 

[jmasterj]

@kelpiemsp Thanks again for updating all of us. I was curious if you have heard anything about the next phase of the trial?

 

[EDDTEKK]

Sorry didn't catch the story. Did @kelpiemsp experience a reduction in tinnitus or not?

 

[kelpiemsp]

@kelpiemsp did you have real hyperacusis every day before trying the device? What kind of sensation did you feel in your ears with noises and what kind of noises were painful?

It's hard to say. From January through March it was hyperacusis so bad keyboard typing hurt. It did get slowly better from that for sure. When I started the trial I was under the impression I no longer had hyperacusis. But as I continued through the trial, I realized my sound tolerance was improving. So in retrospect, I had mild hyperacusis still at the beginning of the trial.

It was only after using the device, did sounds quit becoming painful and distorting. For reference, I can now vacuum without pain (even though I still protect). And my dog's bark (over 100db) doesn't hurt.