University of Minnesota Tinnitus Research with Acoustic and Body Stimulation

[BuzzyBee]

Thanks so much for the updates!

 

[Tripstan]

Just had my first appointment yesterday. Everything went great, just an intake evaluation. Like @kelpiemsp said the 10 mins of silence in the soundproof booth was brutal. But afterwards in the real world you really don't notice your T. I'll keep you updated as the session progress. I also have no hearing loss, which is odd as I've been a musician for 15 years. I heard all the way up to 16K and the lowest freq too. I always thought I had dog ears. So at least I have that going.

 

[Jiri]

Guys, @kelpiemsp & @Tripstan thank you a lot for the updates. Much appreciated. When you get to see one of those researchers again, could one of you, pretty please, ask if this treatment would also work on people who got their tinnitus specifically as a result of a viral or bacterial infection? Or it doesn't really matter how you got your tinnitus or what made it worse over the years? There's just so so many possible causes for t. and if one has it for a long period of time, it becomes nearly impossible to trace back everything that could worsen the condition.

We all get ill from time to time, so I was just wondering... thanks again.

Jiri

 

[kelpiemsp]

@Jiri I asked the PI about other types and He said from the perspective of this treatment there is either somatic or non. It doesn't matter at all what caused the tinnitus. And it works on both, just more effective with somatic. His words. However, he did have some less than stellar news about the University of Michigan study. But I will write a full synopsis later. Nothing to be overly concerned about.

 

[Jiri]

Perfect. Thanks heaps @kelpiemsp . You guys are what gives ppl like me the strength to not give up what otherwise appears to be 'fighting a losing battle.'

 

[Manny]

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!

@kelpiemsp Thank you so very much for the updates, as others wrote it really gives some hope.
I see that you wrote that those participating in the current trial (such as yourself) will be eligible for participation in the next trial. But, do you know whether they will also be recruiting entirely new volunteers for the next trial? Will it be a Phase-III style large-scale trial?
I ask because I'm originally from Minneapolis and my parents still live there and it may be worth it for me to move back temporarily to participate. I would go for the current trial, but I'm guessing it's probably too late at this point, also I'd like to hear about the results (hopefully good!!) of the current trial before moving back to MN for treatment as I'd probably have to give up my apartment and job where I am now, or else constantly travel back and forth
But, if the only way to get in at all is to participate now, I'd try to get in now (if it's not already too late of course).

 

[kelpiemsp]

Hi everyone! I had my second session on Friday. I sat in a sound proof booth and rated my T like 8 times throughout the process. The second session consisted of mainly matching my T sound and pitch 5 times, and then creating an audio file mixed to my hearing level so that all tones come across the same. I will be going every week here for a bit.

I did get a chance to ask the PI how their study was different from the UofMichigan. He explained to me at the UofMinnesota they are using the Trigeminal Nerve to reduce activity in the inferior colliculus instead of trying to access the DCN. It is important to note that most of Shore's work is actually based off the work done at the UofMinnesota. He also said, in the very beginning, they used random timing (the same that they used on guinea pigs) initially to get T reduction, and that worked. But he said, they believe and have seen in early trials, that certain timings can produce significant effects (double what they were hoping for).

When comparing the UofMinnesota to the UofMichigan is that Michigan didn't have a real control. Namely, many researchers have called out the UofMichigan study somewhat since the study design doesn't accurately account for placebos. I guess if you have actually used the device, it is still obvious if you are getting the treatment or the control. He didn't say that it was "bad" just that the real effects aren't quite as apparent as the research suggests.

 

[kelpiemsp]

@kelpiemsp Thank you so very much for the updates, as others wrote it really gives some hope.
I see that you wrote that those participating in the current trial (such as yourself) will be eligible for participation in the next trial. But, do you know whether they will also be recruiting entirely new volunteers for the next trial? Will it be a Phase-III style large-scale trial?
I ask because I'm originally from Minneapolis and my parents still live there and it may be worth it for me to move back temporarily to participate. I would go for the current trial, but I'm guessing it's probably too late at this point, also I'd like to hear about the results (hopefully good!!) of the current trial before moving back to MN for treatment as I'd probably have to give up my apartment and job where I am now, or else constantly travel back and forth
But, if the only way to get in at all is to participate now, I'd try to get in now (if it's not already too late of course).

It will be a phase 3. I do not know the size. They will start recruiting towards the end of 2018. I will provide updates as I totally plan on being apart of that. You may still be able to get in. One member on here @Tripstan I believe got in just a few weeks ago. But things are pretty slow at this point.

 

[Manny]

It will be a phase 3. I do not know the size. They will start recruiting towards the end of 2018. I will provide updates as I totally plan on being apart of that. You may still be able to get in. One member on here @Tripstan I believe got in just a few weeks ago. But things are pretty slow at this point.

Thank you!

 

[threefirefour]

It will be a phase 3. I do not know the size. They will start recruiting towards the end of 2018. I will provide updates as I totally plan on being apart of that. You may still be able to get in. One member on here @Tripstan I believe got in just a few weeks ago. But things are pretty slow at this point.

I'll come out and ask the golden question. Do these guys plan on releasing a tinnitus device? And if so, when do they think it will be on the market?

 

[Paulmanlike]

Did it actually help you? How? Did they actually say it's meant to be used daily then weekly then monthly until it disappears? Quite a statement that I will hold onto cautiously.

@Aaron123 @attheedgeofscience do you have any thoughts or information on this thread that you can contribute?

 

[kelpiemsp]

I'll come out and ask the golden question. Do these guys plan on releasing a tinnitus device? And if so, when do they think it will be on the market?

@threefirefour

They absolutely plan on releasing a tinnitus device. From what I understand, they are working on making the device customizable. I'm not sure exactly what that means. Phase 3 will be with the actual device. And that will begin in 2019.

What I find VERY encouraging is how little they know and yet are able to reduce tinnitus. The PI said in the very first trial with humans they used guinea pig parameters, and yet that worked. However, humans are a little bit different lol. So in the current trials they are learning different timings have different effects, but that they can suppress more than the expected.

Trial 3 will be with a polished device that uses the best parameters found in the trial I am in.

My guess is that when Shore had a redo of their trial, she changed the timing since initially signal timing work was using the guinea pig offset.

I think the most exciting this is that this device will stimulate a different nerve. Which ultimately means, another pathway, and another option. Shore's device may work better for certain types of T, and this may work better for others. Since Shore's is using the DCN and this is using the inferior colliculus.

 

[Greg Sacramento]

@kelpiemsp This is interesting.

"I think the most exciting this is that this device will stimulate a different nerve. Which ultimately means, another pathway, and another option. Shore's device may work better for certain types of T, and this may work better for others. Since Shore's is using the DCN and this is using the inferior colliculus."

The inferior colliculus neurons has somatosensory influence. What confuses me is that Susan Shore talked a lot about this method back in 2009. The Encyclopedia of Neuroscience has several articles about this with her stamp on it.

 

[kelpiemsp]

@kelpiemsp This is interesting.

"I think the most exciting this is that this device will stimulate a different nerve. Which ultimately means, another pathway, and another option. Shore's device may work better for certain types of T, and this may work better for others. Since Shore's is using the DCN and this is using the inferior colliculus."

The inferior colliculus neurons has somatosensory influence. What confuses me is that Susan Shore talked a lot about this method back in 2009. The Encyclopedia of Neuroscience has several articles about this with her stamp on it.

Minnesota did the research to prove it the guinea pig study.

 

[Greg Sacramento]

I had posted the Minnesota study. Susan Shore had thought the IC method would relate better to the jaw and chewing muscles. I like the research Minnesota has done in the past. Thanks for the information and updates.

 

[J.Hartog]

Probably asked before but when will these devices will be able for the public. I need relief... T is hammering me lately due to benzo withdrawal and I am becoming desperate.

 

[kelpiemsp]

Did it actually help you? How? Did they actually say it's meant to be used daily then weekly then monthly until it disappears? Quite a statement that I will hold onto cautiously.

I haven't started the active parameters of the trial. I don't believe I have ever commented on how it affects my T. As far as using daily, weekly, monthly that is an example. They described it in similar terms, but that is how neural plasticity works. You are effectively exercising the brain.

 

[threefirefour]

I haven't started the active parameters of the trial. I don't believe I have ever commented on how it affects my T. As far as using daily, weekly, monthly that is an example. They described it in similar terms, but that is how neural plasticity works. You are effectively exercising the brain.

You are doing god's work by updating us.

btw how long does the phase-II last?

 

[RingerBell]

Two players in the same market segment. That should create some pressure for the both teams to finish their trial first.

 

[Spiral]

When comparing the UofMinnesota to the UofMichigan is that Michigan didn't have a real control. Namely, many researchers have called out the UofMichigan study somewhat since the study design doesn't accurately account for placebos. I guess if you have actually used the device, it is still obvious if you are getting the treatment or the control. He didn't say that it was "bad" just that the real effects aren't quite as apparent as the research suggests.

Let the competition begin! Best way they can come out of this situation is prove that they are the best. However, the first one to the market will undoubtedly make tons of money.

 

[threefirefour]

Let the competition begin! Best way they can come out of this situation is prove that they are the best. However, the first one to the market will undoubtedly make tons of money.

I think the real competition is who can get to market first.

 

[Contrast]

Novartis will fail because gene therapy is a expensive complicated and ineffective way to regenerate hair cells

Frequency will fail not because they failed to regenerate hair cells but because they cannot navigate the the cochlea using their gel, unlike Novartis which uses a virus to do so.

The FDA will fail both trials

That's free market competition at work racing to help desperate people in need.

 

[PetitGarsTimide]

Novartis will fail because gene therapy is a expensive complicated and ineffective way to regenerate hair cells

Frequency will fail not because they failed to regenerate hair cells but because they cannot navigate the the cochlea using their gel, unlike Novartis which uses a virus to do so.

The FDA will fail both trials

That's free market competition at work racing to help desperate people in need.

Sir could you repeat please I didn't understand very well ... Frequency will what ?

 

[Jiri]

It doesn't matter at all what caused the tinnitus.

This. If that is true then these devices are the miracle we need.

 

[kelpiemsp]

You are doing god's work by updating us.

btw how long does the phase-II last?

This phase is supposed to be finished by the end of the 2018. They want to do phase 3 early 2019.

I also just finished my third session on Friday. It was lots of sitting in a soundproof room wearing ear plugs and masking tinnitus. Waiting 5 minutes, and masking tinnitus etc.

All in all it was the worst session. I spent an hour in a soundproof booth with ear plugs on measuring my tinnitus. I then had an electric clip hooked to each ear lobe and they tested my comfort levels, for five minutes on, and off, all while wearing godforsaken ear plugs in a soundproof booth. (if you can't tell, I hate doing that) My EEG will be on the 22nd. And after that they will begin using the treatment.

 

[Samir]

Thanks for keeping us all up to date @kelpiemsp. I hope you will see the benefit you deserve from the upcoming treatment.

 

[Mathew Gould]

This can depend on cooperation of spinal nerves and the numbered cranial nerves for the amount of time of less T when the physical neck is involved. When one hears cracking within the neck, it's related to the discs, the hard structure. So when this happens, correction to the spine itself must be made first and any disease must also be addressed. Then severe muscle spasms that has relation to lordosis would be much less if not eliminated. Then there need for discussion on damaged or twisted nerves. I'm not talking about what Susan Shore has said per the DCN which I have quoted here, I'm referring to disease that can be increased from trauma (physical structure) of the c spine or from aging. Forty percent of the time in these situations there's no hearing loss, but there is T.

I have T and my upper middle cervical spine in the back region is all weak and my neck and jaw are misaligned especially my neck. I'm not sure what to do next. I got a neck x-ray and it came back fine. I think I'm gonna start more physical therapy on my neck. Anything else I should do?

 

[Mathew Gould]

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!

I can modulate my tinnitus with my neck, but only my secondary tinnitus sound. I can't modulate my tinnitus with my main tinnitus sound. Only a few times I could. Would I qualify or would the device help me?

 

[Estefan]

@kelpiemsp thank you so much for the updates! I am from Minnesota and I am wondering if there is anyway I could contact someone to possibly see if I could get into that study?

 

[kelpiemsp]

@kelpiemsp thank you so much for the updates! I am from Minnesota and I am wondering if there is anyway I could contact someone to possibly see if I could get into that study?

PM'ed you with info.