New University of Michigan Tinnitus Discovery — Signal Timing

[DoNotGoGentle]

Because so many different gadgets and gizmos have been sold in the past as "tinnitus cure". But I m still hopeful that this one will be different.

True, they probably won't sell it. But if it really works I will steal it from them!

Just kidding!

I don't think it will be a cure it might lower the sound. Help people get some silence back. It is helpful that this is from a university study. The study I believe was partly funded by ATA American Tinnitus in 2013. Cheers mate!!

 

[RonnieCarzatto]

I'm sure a lot of people with eye problems were sold different gadgets and pills, etc.. Eventually, here you now have Lasik clinics everywhere. It's a trial and error.

 

[RonnieCarzatto]

A participant who travelled to Michigan and was part of a study for this posted his experience on Reddit:

"It was a double blind crossover model, so everyone got the real treatment and the sham treatment at separate times. I was not unblinded following the experiment. However, I felt that I reacted moderately to one of the two periods and not the other, and this was reflected in both my THI scores as well as, I believe, objective volume matching performed in the lab.

They were able to tell me that some people responded to both the experimental protocol as well as the sham protocol, some people did not respond to either, and some people responded to the real treatment but not the sham treatment. Further, no one responded to the sham treatment and not to the real treatment. Therefore, since I responded to one and not the other, I responded to the experimental protocol.

My tinnitus did not disappear, but my ratings for volume decreased moderately, and my ratings for distress plummeted as a result. The effect wore off after a couple days of not using the device.

I have had other periods where my T has been less significant, unrelated to any treatment -- but the 2-3 weeks that it seemed to be working, it did so much more consistently, and in some cases dramatically, than it does in general.

Worth noting that I spent some amount of time and money traveling regularly from DC to MI to participate, so I have a bias in that I want to believe this is a real thing. The animal data is pretty compelling to me, though."​

This same user also posted their tinnitus background on the same page on reddit:

"14khz CRT-monitor whine, predominantly on my left side, where I also (shockingly, I know) have a dip in my hearing thresholds around 14khz. Other tones and sounds, too, but that one is the only one that consciously bothers me.

I can only guess, but I believe it's some combination of noise exposure, chronic anxiety, TMJ, and possibly exposure to and withdrawal from drugs including benzos, SSRIs and Wellbuterin. The thing which really made it bad was a single concert without hearing protection, attended during an extremely stressful period... but the anxiety of all that drove me back to benzos, and the tinnitus didn't really set in as a chronic thing until I withdrew from the benzos again a couple years later. I was also a premature baby with a bunch of serious childhood ear infections. So your guess is as good as mine."​

 

[SilverSpiral]

I want to try it.

 

[Rubenslash]

Pretty sure that user is @linearb

 

[Wojtek Kalka]

Price, availability ever?

 

[RonnieCarzatto]

@Wojtek Kalka, I believe more clinical testing will be done later this year, and from what I understand, there weren't many people tested the first time around. That's an encouraging post on Reddit there however one must be patient for these things.

 

[Markku]

I believe more clinical testing will be done later this year

Yes, this was the latest we got in January this year:

January 2017 Update on the trial (thanks again @DebInAustralia for the outreach!)

"We hope the findings will be published in the next few months.

We are hoping to set up another trial later this year, pending funding.

International patients will not be able to participate in this particular trial.

Best,

Susan Shore"

Maybe!

As per above, international patients wouldn't be able to participate. (Assuming you don't have US citizenship).

 

[linearb]

Pretty sure that user is @linearb

STOP DOXXING MY REDDIT POSTS NOW YOU GUYS WILL KNOW HOW MUCH TIME AND MONEY I SINK INTO MAGIC THE GATHERING CARDS

 

[DoNotGoGentle]

STOP DOXXING MY REDDIT POSTS NOW YOU GUYS WILL KNOW HOW MUCH TIME AND MONEY I SINK INTO MAGIC THE GATHERING CARDS

Would you take part in the next trial?

 

[linearb]

Would you take part in the next trial?

Well, at the time of the last trial, I was living with good airport access (and direct flights to MI) in a loud city I disliked, with no real responsibilities other than work which is something I can do remotely from anywhere with an internet connection. If I was in that same situation, I'd absolutely do it again -- I did ultimately spend maybe $4-5000 on the travel related to the trial, but, I used it as an excuse to do some sightseeing in Michigan, scope out Ann Arbor as a potential place to live, and reconnect with a college friend.

However, my life circumstances have changed dramatically. I am now in a quiet, woodsy place that I adore, and became a father within the last year. Thus, my free time, and money, needs to be allocated pretty differently -- and I am now much further from a regional airport, which would mean longer, more complicated flight plans.

If there is another trial, they have told me they would like to have me in it since it sounds like I was one of the better responders... but that will depend a lot on where it is and what's involved in getting there.

 

[linearb]

True, they probably won't sell it. But if it really works I will steal it from them!

I have a fairly solid grasp on what would be involved in constructing a device that functions as theirs does, and I think it's something that any third-year compsci or eleceng student could cobble together. However, testing that the device output is to spec is a much more complicated problem. I know enough about good test design to understand the difficulties there, and conceptually what would need to be done to test it... but I'm a software guy, and the test obstacles here are purely hardware oriented. Put simply, the device itself could be made with a $200 aurdino kit and 40 hours of aurdino coding. Testing it would require being able to connect it to a much more sophisticated computer capable of analyzing the audio and electrical output of the device, and ensuring they are synchronized to less than 1-millisecond accuracy. That's not "put a man on the moon" level difficulty, but it's a hell of a lot harder than anything I've ever had to design.

If you were off by some small margin, and if the device design itself is sound, then you would expect that using it would actually increase tinnitus activity (based on what the people involved in the study told me). Additionally, even thinking about this, is flirting with conspiracy to commit patent fraud or something. I'm not an IP lawyer; I think it's possible that one could make something like this for oneself using publicly available data and not be too worried about it, but the second you think about selling it or probably even giving it away, you can (and should) be sued into oblivion.

 

[Alue]

STOP DOXXING MY REDDIT POSTS NOW YOU GUYS WILL KNOW HOW MUCH TIME AND MONEY I SINK INTO MAGIC THE GATHERING CARDS

HAHA I was pretty sure I knew it was you long before seeing that post. I have multiple reddit accounts.

 

[Nick07]

STOP DOXXING MY REDDIT POSTS NOW YOU GUYS WILL KNOW HOW MUCH TIME AND MONEY I SINK INTO MAGIC THE GATHERING CARDS

linearb it's nice to see another magic player on here

 

[linearb]

linearb it's nice to see another magic player on here

what are your formats of choice and do you play on MTG Online?

 

[Nick07]

I play mostly modern and some limited. I haven't played MTG Online in years.

 

[Marlino]

This thread is interesting.
I also have this somatic kind of tinnitus, which is very weird. I suspect it to be nerve compression and pressing on the jaw, yawning etc presses even more on the already irritated nerve and by this altering my t. Currently trying pregabaline, since it can be used for trigeminus neuralgia.
The effect is unconclusive. It might help. I will increase the dosage to say for sure.

But this alternative DCN theory makes also sense to me for some reasons...

 

[DoNotGoGentle]

This thread is interesting.
I also have this somatic kind of tinnitus, which is very weird. I suspect it to be nerve compression and pressing on the jaw, yawning etc presses even more on the already irritated nerve and by this altering my t. Currently trying pregabaline, since it can be used for trigeminus neuralgia.
The effect is unconclusive. It might help. I will increase the dosage to say for sure.

But this alternative DCN theory makes also sense to me for some reasons...

Yeah DCN! Also check this video out if you have not.

 

[Marlino]

I am now in a quiet, woodsy place that I adore, and became a father within the last year.

I've to say you are a hero. Congratulations!

 

[Marlino]

That is exactly how MuteButton works. I was on clinical trial for the device.

Can you provide more details? When I google for Mute Button, many people seem disappointed with the first version. So you were in the trial for the second version right? What was your impression, is it a promising therapy?

 

[linearb]

@davidamee86 the U of M researchers told me that despite being bimodal devices, the mutebutton tech is fundamentally different than what U of M is doing. I'm afraid I don't remember the details

 

[DoNotGoGentle]

Presentaion of Dr.Susan Shore PhD. and tinnitus researcher.

watch the video at 1:07:00
Quote,
"If you wanted to like develop new drug treatments for tinnitus, which I don't think is a good idea anyways...........................Ideally what you want to do is prevent the cochlear damage, or if you can't do that, you want to regenerate the auditory nerve fibres, so that you're maintaining the input into the cochlear nucleus, and then you can combine that with a device [her invention] you know, and maybe you've got a new treatment."
--------------------------

Dr.Shore, so what your're saying is we'll just have wait for stem cells. Well at least she's optimistic.

We might have treatment for regrowing ear hair cells and synaptic connections and then we have this device. Sounds like we have have hope for future. Don't give up people!!!! Rise up and press on!!!!

 

[RonnieCarzatto]

@DoNotSoGentle Love your optimism. Be cautious though. But still, it is a new age.

 

[Paulmanlike]

Good on him having hope it's what keeps me going !

 

[DoNotGoGentle]

@DoNotSoGentle Love your optimism. Be cautious though. But still, it is a new age.

"might have" is the key word

 

[RonnieCarzatto]

@DoNotGoGentle Good point!

 

[davidamee86]

@davidamee86 the U of M researchers told me that despite being bimodal devices, the mutebutton tech is fundamentally different than what U of M is doing. I'm afraid I don't remember the details

They seem to be fairly similar though. Both used headphones to stimulate the auditory neurons and both use an electrical stimulation to excite either the tongue or the face which stimulate neurons which seem to run past or around the auditory neurons. The researcher in Dublin told me it was all about timing more than anything else.

 

[davidamee86]

Can you provide more details? When I google for Mute Button, many people seem disappointed with the first version. So you were in the trial for the second version right? What was your impression, is it a promising therapy?

I would give it a 5 out of 10. I used to wear it for an hour. For most of the therapy I did 30 mins in the morning and 30 at night. Once I would take it off my tinnitus was much sharper and probably a little bit worse but near the end of the therapy I started doing it just before I would go to bed for a full hour and I often woke up and the tinnitus would start flickering on and off. Unfortunately it never stayed off but it reduced my tinnitus by like 25% and also if was to use it again I would keep using it just before bed because it seemed to be making a slow and steady improvement.

 

[Fabrikat]

Unfortunately it never stayed off but it reduced my tinnitus by like 25% and also if was to use it again I would keep using it just before bed because it seemed to be making a slow and steady improvement.

Hi @davidamee86! Has your tinnitus reduction of 25% persisted to date following your trial with the Mutebutton? Would it have reduced further and permanently, with continued use, in your opinion? I'm interested to know how it's been for you since then.

 

[Fabrikat]

I called Susan's office they said the data looks good. They said to call back in May 2017 if they get more money they will start another trial. I hope they find the money!!!

@DoNotGoGentle, did you end up speaking to Susan Shore's office in May? Have they published any new trial outcomes as far as you're aware and is she still planning on further trials this year? They've been very quiet over there of late.