University of Minnesota Tinnitus Research with Acoustic and Body Stimulation

#451
EDDTEKK said:
Why he doesn't share such experience in this thread :( we need some hope and success stories.
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We suspect he has signed an NDA, which inhibits his ability to talk about it. He is a very nice guy and wouldn't purposefully be ignoring this thread and not sharing information.
 
#456
MadsWithT said:
Say, you write that Meniere's decease is your cause of tinnitus. I mean to recall that that particular cause was a exclusion point form these trials? Or am I wrong?
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Why on Earth are you saying I have Meniere's disease?

Bill_ said:
Considering that his tinnitus was caused by Mèniere's I wouldn't throw my hopes out of the window just yet. Mèniere's might very well be a rather "special" case.
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What? Meniere's is typically low frequency hearing loss and vertigo which I have neither of.

I have no idea why you are saying I have Meniere's. My post said nothing of sort.

The trial didn't work for me. Doesn't mean others didn't have success but I don't have much else to say.

Edit: Nevermind I see now. You are all looking through my post history. Yes a year ago i wrote my doctor thought I have Meniere's. It wasnt a diagnosis. He sent me on to a vestibular therapist and an ENT who both verified I do not have Meniere's. Most of the prior symptoms I wrote about were nothing but anxiety that I caused myself.
 
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#457
duder12 said:
Why on Earth are you saying I have Meniere's disease?



What? Meniere's is typically low frequency hearing loss and vertigo which I have neither of.

I have no idea why you are saying I have Meniere's. My post said nothing of sort.

The trial didn't work for me. Doesn't mean others didn't have success but I don't have much else to say.

Edit: Nevermind I see now. You are all looking through my post history. Yes a year ago i wrote my doctor thought I have Meniere's. It wasnt a diagnosis. He sent me on to a vestibular therapist and an ENT who both verified I do not have Meniere's. Most of the prior symptoms I wrote about were nothing but anxiety that I caused myself.
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Not meaning to jump in, all due respect, and I'm terribly sorry the trial didn't help you ... that really sucks ... but it does say under your name in the box on the left that your "cause of tinnitus" is Meniere's. So I'm sure that's where they thought that was the case.
 
#458
Last post aside, it feels like we're closer than freaking ever to finally getting some relief. Is there ANYTHING we can do to help speed along this Minnesota process? Try and find some wealthy donors to help out? GoFundMe to raise additional money? Anything? I thought I remember reading that it was going to take like another year longer than expected because they didn't have enough resources/workers or whatever to do certain parts of the trial concurrently.

Mine's gotten so much worse over the past four months, sleep near impossible, getting desperate like a lot of us. And it feels like we're so darn close to some relief.
 
#459
Sorry for three posts in a row but it won't let me edit the last one for some reason. I think I was mistaken and thinking of the Michigan trial with the not enough resources part.

But for my follow-up -- it is confusing with these three different ones going on and trials and expected dates and whatnot. What's the latest as far as where this is on the timeline to come out? Is another trial needed or is this it, etc., etc., any preliminary date estimates? It's all so exciting AND confusing, lol.
 
#460
duder12 said:
Why on Earth are you saying I have Meniere's disease?



What? Meniere's is typically low frequency hearing loss and vertigo which I have neither of.

I have no idea why you are saying I have Meniere's. My post said nothing of sort.

The trial didn't work for me. Doesn't mean others didn't have success but I don't have much else to say.

Edit: Nevermind I see now. You are all looking through my post history. Yes a year ago i wrote my doctor thought I have Meniere's. It wasnt a diagnosis. He sent me on to a vestibular therapist and an ENT who both verified I do not have Meniere's. Most of the prior symptoms I wrote about were nothing but anxiety that I caused myself.
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Is it possible you got the sham? Also under your 'cause of tinnitus' it says menieres
 
#461
@duder12 Maybe you were in placebo group? Or got timing that doesn't work?

I remember that they are trying different timings during that trial, some work a little, some work a lot and some doesn't work at all.
 
#463
Snake said:
I remember that they are trying different timings during that trial, some work a little, some work a lot and some doesn't work at all.
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THIS.

There are a lot of variables in this treatment.

-The site of the electrical stimulation
-The amount of electrical stimulation
-The timing of the electrical stimulation
-The nature of the sound
-The duration of the treatment (both per session and overall)

This is new technology and people here are trying to draw final conclusions already.

If I were to try one of these treatments at this early stage and it didn't work for me I don't think I'd write it off. I'd try one of the others or retry later if they made changes.
 
#464
Bill_ said:
Considering that his tinnitus was caused by Mèniere's I wouldn't throw my hopes out of the window just yet. Mèniere's might very well be a rather "special" case.
Click to expand...
MarkLud said:
Not meaning to jump in, all due respect, and I'm terribly sorry the trial didn't help you ... that really sucks ... but it does say under your name in the box on the left that your "cause of tinnitus" is Meniere's. So I'm sure that's where they thought that was the case.
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Shit sorry. I had no idea it said that. I fixed it so it says hearing loss.
 
#465
GlennS said:
THIS.

There are a lot of variables in this treatment.

-The site of the electrical stimulation
-The amount of electrical stimulation
-The timing of the electrical stimulation
-The nature of the sound
-The duration of the treatment (both per session and overall)

This is new technology and people here are trying to draw final conclusions already.

If I were to try one of these treatments at this early stage and it didn't work for me I don't think I'd write it off. I'd try one of the others or retry later if they made changes.
Click to expand...

No one is writing the treatment off that isnt being over dramatic.

I was in sessions since like June through December logging every single day. My tinnitus varies but I just didn't notice any variations due to the sessions. If anything they irritated my tinnitus more often than I felt they helped.

I'm just saying it never felt like it did anything for me after many sessions. Maybe it did and I just don't know it but that certainly doesn't mean it didn't help other people.

Maybe I was in a placebo but I don't see why they would have me be placebo the entire time when they can easily change that session to session without me having a clue. I don't see a reason why they would keep it that way the entire trial but who knows. People shouldn't just assume I was because my experience wasn't positive.

Lastly, I think my experience should be a good wake up call for people. The best treatment for tinnitus is to try and get on with your lives and stop obsessing over forums. Watching these threads for years impatientely waiting for your chance at the treatment is going to be nothing but devestating for you if you finally try it and it doesn't meet your expectations.

My tinnitus is horrible but every month I get better at it. It's much better now than it was before I started the treatment. Why? Because time has allowed my tinnitus anxiety to heal. If anything its louder than ever but I am 10x better at accepting it and ignoring it because I finally let go of my anxiety over it.

If I get more info from the trial that contradicts anything I said or let's me know I didn't receive the real treatment I will certainly let this thread know. I just have zero expectations after experiencing the trial so have moved on personally.

Sorry to disappoint but sometimes it's better to be real than fake optimism.
 
#466
duder12 said:
Sorry to disappoint but sometimes it's better to be real than fake optimism.
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I am sorry that the trial didn't work for you. I hope that another machine, after they learned more and tuned it better, will.

However I'd like to remind everyone that Neuromod's trial (which was a device very similar to this one) also had 20% nonresponders. The reason to be optimistic about these machines remains unchanged. Based on what information we have available, they do work for the vast majority, though unfortunately not everyone.
 
#467
duder12 said:
The best treatment for tinnitus is to try and get on with your lives and stop obsessing over forums.
Click to expand...
Why you might think that's the best approach the term treatment is being misappropriated. That approach is best characterized as a behavior adaption.

duder12 said:
Watching these threads for years impatientely waiting for your chance at the treatment is going to be nothing but devestating for you if you finally try it and it doesn't meet your expectations.
Click to expand...
Part of life is trying things out and see if they work. If you not emotional able or emotional prepared to handle lack of success then you're not going to be able to grow and discover in life.
 
#479
Bill Bauer said:
This, despite him browsing this site earlier today.
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Wow, wish he would have said something.... Not sure what to think. Because if he can't talk then that's what he should tell us. The wait continues....the ringing continues. Dear Lord....
 

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