New University of Michigan Tinnitus Discovery — Signal Timing

[Watasha]

My money is on OTO-313 based on some positive things I've heard from people in the know.

Have a little inside information that's encouraging?

 

[Watasha]

If you don't mind me saying because I am quite cynical and jaded when it comes the medical community, their ignorance does not surprise me at all. Every single ENT or audiologist I have encountered except for 2 who happen to be involved in tinnitus research had no idea what I was talking about when I walked into their office and explained both my case and bimodal stimulation. They were absolutely clueless and sometimes extremely rude especially when I was interrupting their "patient blaming" mantra. I had one ENT get so frustrated that I knew more than him that he told me my proactiveness as a patient was a sign of my "high anxiety" which was "causing my TFI distress". Just idiots, the majority of them.

Are there any in the pipeline expected to come out soon or are they all a few years out? Curious what I may be missing, @BuzzyBee.

I know it's frustrating and the suffering can be unbearable, but people can work themselves into a frenzy in the beginning waiting on the next best thing to come to market.

 

[IntotheBlue03]

I know it's frustrating and the suffering can be unbearable, but people can work themselves into a frenzy in the beginning waiting on the next best thing to come to market.

I agree @Watasha and I know at this point I'm definitely looking like one of those crazies in that camp. For me it's just been difficult keeping up with what's actually in the pipeline at least in my state of distress. I appreciate how kind many members have been in catching me up, wonder what else @BuzzyBee can catch me up on.

 

[NYCGuy]

That's my guess too, but I don't understand why most of the audiologists (and doctors) I've met have never heard of Dr. Shore or her device or signal timing. Maybe they have seen so many tinnitus devices that they don't want patients to get their hopes up? But like @AfroSnowman, I'm still cautiously optimistic.

The good news is there are at least 8 tinnitus treatments in the pipeline all at various stages. My money is on OTO-313 based on some positive things I've heard from people in the know.

Same here and even one of the doctors at one of the clinical trial locations said he was seeing great results on patients, so I have high hopes too.

 

[IntotheBlue03]

Same here and even one of the doctors at one of the clinical trial locations said he was seeing great results on patients, so I have high hopes too.

Isn't OTO-313 based on Acute Tinnitus and not Chronic Tinnitus? Are we still looking at a few years if it makes it to market?

 

[Watasha]

I agree @Watasha and I know at this point I'm definitely looking like one of those crazies in that camp. For me it's just been difficult keeping up with what's actually in the pipeline at least in my state of distress. I appreciate how kind many members have been in catching me up, wonder what else @BuzzyBee can catch me up on.

I'll probably be flagged for this, but the beginning is exactly when you should NOT be getting caught up on the pipeline. You do your triage, get a course of Prednisone, rule out treatable causes and then try to move on with life. When you start feeling better, work your way back into it. If there are some treatments available for compassionate use that are time dependent on onset, then go for it (there's a spreadsheet on the site of all treatments in the pipeline and their phases), but I truly believe getting wrapped up isn't helping and can compound the problems.

The Susan shore device is only step 1 in a long process of treatments to come.

 

[Gb3]

Isn't OTO-313 based on Acute Tinnitus and not Chronic Tinnitus? Are we still looking at a few years if it makes it to market?

They don't know. They first investigated tinnitus onset up to 6 months long, and now they are testing up to a year. Their main goal is to get it to market and starting at 6 months to a year, which increases the chances of it working in their minds.

They plan to increase the duration of the tinnitus onset in future studies. I think Phase 3 is scheduled for next year.

 

[IntotheBlue03]

I'll probably be flagged for this, but the beginning is exactly when you should NOT be getting caught up on the pipeline. You do your triage, get a course of Prednisone, rule out treatable causes and then try to move on with life. When you start feeling better, work your way back into it. If there are some treatments available for compassionate use that are time dependent on onset, then go for it (I think there's a spreadsheet on the site of all treatments in the pipeline and their phases), but I truly believe getting wrapped up isn't helping and can compound the problems.

The Susan shore device is only step 1 in a long process of treatments to come.

I see your point and agree with you and, unless anyone has some inside information, I've talked to enough senior members here to at least have an idea that there's nothing outside of Susan's device potentially coming in the short term. I'm obviously very focused on the here and now. Not trying to undermine anyone else's experience but moving on with my life has not been an option as much as I'd like it to be. The severity of what I'm experiencing has destroyed my life completely and continues to threaten every aspect of it. I've exhausted all alternative treatments and have signed up for TRT/CBT with medication but every second is still a struggle 2 months in with extreme distress. I honestly do not know how I will continue to make it day to day but am hoping for the best. If you happen to know of any success stories when it comes to severe reactivity and habituation that would be great as that is my next stop.

While I'm no expert Susan's device seems the most fitting for my case. I have no specific acoustic/trauma event to point to, my tinnitus is centralized/potentially brain tinnitus from onset and has somatic qualities and matches @linearb's tinnitus (14 kHz oscillating hiss) who responded in the first trial. So I'm more hopeful than others in that aspect, especially for the fact that pitch and tone may be less of a concerning factor for the efficacy of her device. Hoping others who may have had questions about this see this post for reference.

 

[Watasha]

I see your point and agree with you and, unless anyone has some inside information, I've talked to enough senior members here to at least have an idea that there's nothing outside of Susan's device potentially coming in the short term. I'm obviously very focused on the here and now. Not trying to undermine anyone else's experience but moving on with my life has not been an option as much as I'd like it to be. The severity of what I'm experiencing has destroyed my life completely and continues to threaten every aspect of it. I've exhausted all alternative treatments and have signed up for TRT/CBT with medication but every second is still a struggle 2 months in with extreme distress. I honestly do not know how I will continue to make it day to day but am hoping for the best. If you happen to know of any success stories when it comes to severe reactivity and habituation that would be great as that is my next stop.

While I'm no expert Susan's device seems the most fitting for my case. I have no specific acoustic/trauma event to point to, my tinnitus is centralized/potentially brain tinnitus from onset and has somatic qualities and matches @linearb's tinnitus (14 kHz oscillating hiss) who responded in the first trial. So I'm more hopeful than others in that aspect, especially for the fact that pitch and tone may be less of a concerning factor for the efficacy of her device. Hoping others who may have had questions about this see this post for reference.

I do not know any specific examples of reactivity habituation (though I do believe that they exist). Does yours react and settle back down in less than 24 hours? I do know of examples of habituation with hyperacusis where high pitches cause distortions in hearing along with tinnitus. I'm glad to hear that you're looking into TRT/CBT.

Regarding Dr. Shore's device, are you able to somatically modulate your tinnitus? I can modulate some but not all (I experience at least three sounds). Glad to hear that pitch and tone may be less concerning, I was not aware of that. I can't pitch match mine for the life of me.

 

[IntotheBlue03]

Does yours react and settle back down in less than 24 hours?

Regarding Dr. Shore's device, are you able to somatically modulate your tinnitus?

Thanks @Watasha. My reactivity competes with every single sound, including my own voice, for as long as the external stimuli lasts. Once I'm not around those sounds or near silence, the reactivity will normally return to baseline. This is still unfortunate as I'm unable to mask it, and, as I understand, it seems to be this reactivity that makes habituation difficult. However, this also means I've been constantly exposed to my tinnitus and only my tinnitus for months so I hope that means something in the way of neuroplasticity moving forward.

Yes, I can modulate mine with jaw clenching and chin juts. I'm very excited that Dr. Shore's research is geared towards what her camp believes to be the root of tinnitus as opposed to all these rabbit holes the rest of us have been down to identify a cause. I keep reading that centralized tinnitus is chronic brain tinnitus which to me means a lot of these other potential treatments don't apply to sufferers like me (ex: OTO-313). I neglect to recall who presented this stat in the thread but I believe it's up to 80% of tinnitus sufferers who have a somatic component so hopefully that means her device could reach and provide some relief for the majority of sufferers.

I contacted one of Dr. Shore's researchers and he confirmed that their device only pitch matches up to 12.5 kHz but that participants were not selected based on tonal vs atonal tinnitus. @linearb's results confirms for me we have less to worry about in those regards hopefully.

Here's to those preliminary results come May/June.

 

[Watasha]

Yes, I can modulate mine with jaw clenching and chin juts.

Interesting... I can create a sound with chin juts (high pitched squeal), can stop one of the sounds with clenches (low level background cricket/static), and create a sound with chews on the left side (kinda high pitch squeal). Same can be said if I dry my face and pull the towel down against my cheeks.

None of these are my predominate sound though which makes Shore's device not as exciting for me.

 

[Reed19]

Thanks @Watasha. My reactivity competes with every single sound, including my own voice, for as long as the external stimuli lasts. Once I'm not around those sounds or near silence, the reactivity will normally return to baseline. This is still unfortunate as I'm unable to mask it, and, as I understand, it seems to be this reactivity that makes habituation difficult. However, this also means I've been constantly exposed to my tinnitus and only my tinnitus for months so I hope that means something in the way of neuroplasticity moving forward.

Yes, I can modulate mine with jaw clenching and chin juts. I'm very excited that Dr. Shore's research is geared towards what her camp believes to be the root of tinnitus as opposed to all these rabbit holes the rest of us have been down to identify a cause. I keep reading that centralized tinnitus is chronic brain tinnitus which to me means a lot of these other potential treatments don't apply to sufferers like me (ex: OTO-313). I neglect to recall who presented this stat in the thread but I believe it's up to 80% of tinnitus sufferers who have a somatic component so hopefully that means her device could reach and provide some relief for the majority of sufferers.

I contacted one of Dr. Shore's researchers and he confirmed that their device only pitch matches up to 12.5 kHz but that participants were not selected based on tonal vs atonal tinnitus. @linearb's results confirms for me we have less to worry about in those regards hopefully.

Here's to those preliminary results come May/June.

The percent of tinnitus sufferers who can modulate their tinnitus somatically varies study by study with it averaging out at around 70% with the studies I found combined.

 

[ajc]

Tinnitus is highly complex. Don't forget that for most neurological issues there are no cures, and many lack effective treatments.

So yea... we're looking at 50 years or so before this bugger is tamed.

 

[Niatoolit]

I don't want to sound disrespectful or anything but doesn't anyone else find it odd that this whole forum has based all the successful devices, research etc on only and exactly two people's testimonials (@kelpiemsp and @linearb if I am not mistaken)? I have never heard of anyone else getting cured or even just slightly better other than those two people. It can be literally anything, even just time that cured them. This is my personal opinion.

 

[IntotheBlue03]

Tinnitus is highly complex. Don't forget that for most neurological issues there are no cures, and many lack effective treatments.

So yea... we're looking at 50 years or so before this bugger is tamed.

And what exactly is your 50 year timeline based on? We have a dozen existential crises looming this decade alone. If it doesn't happen now, the chances just drop further and further of ever happening. The fact that Prof. Dirk de Ridder is still citing "massive funding from millionaires" as a requirement for any progress in his depressing Tinnitus Talk Podcast episode has made me lose all faith except for Dr. Susan Shore.

 

[GoatSheep]

I don't want to sound disrespectful or anything but doesn't anyone else find it odd that this whole forum has based all the successful devices, research etc on only and exactly two people's testimonials (@kelpiemsp and @linearb if I am not mistaken)? I have never heard of anyone else getting cured or even just slightly better other than those two people. It can be literally anything, even just time that cured them. This is my personal opinion.

There was also @Clare B who reported Lenire cured her tinnitus in the first trial I believe.

Yes, I see what you're saying. I mean the reality is the community latches on to these single anecdotes out of desperation. Something to keep us going.

In @kelpiemsp's case I've heard it mentioned he was also withdrawing from benzos during the time he was using the device. So that alone could have had an effect. Usually we hear of worsening from benzos, but occasionally people say the tinnitus improves after the withdrawal.

In @linearb's case he said that within like 48 hours the beneficial effects were reducing and he was heading back to baseline. So in his case it was not really time as his improvement didn't persist. So maybe placebo in that case. But he's the first one to tell you that he's just reporting his individual experience and to wait for the final trial results.

But basically yes, we've had like one direct report for each neuromodulation device. With Dr. Lim later joining Lenire and his research now being in Lim-bo. Sorry, had to throw that pun in. Seemed too perfect lol.

The fact that Prof. Dirk de Ridder is still citing "massive funding from millionaires" as a requirement for any progress in his depressing Tinnitus Talk Podcast episode

Yes, it's very distressing. Even more so when we've had one person here make a thread saying they had about a half-a-million to throw at fighting their tinnitus and asked for suggestions for things to try. They never reported donating any money to any research and I don't even think they are a benefactor here in any form.

Another person recently said they are in the top 1% wealth wise and kind of had the same approach, but not asking what research they should put money into.

Another poster said they make more donations to fighting police corruption and false arrests because they don't see tinnitus as being as big of an issue.

So even our own who have money don't seem to want to pour much into it. Personally I am scraping by with noxacusis making less money than I ever have and trying to survive with three children. So I can't give any money. I guess we're screwed.

 

[Watasha]

Tinnitus is highly complex. Don't forget that for most neurological issues there are no cures, and many lack effective treatments.

So yea... we're looking at 50 years or so before this bugger is tamed.

There are too many ways that we know we can modulate tinnitus for me to believe that it will be 50 years. Whether its Retigabine, neuromodulation, electrical stimulation, rTMS, all have shown the ability to change its characteristics. The challenge is on subtyping and optimizing, that takes time and money.

 

[OnceUponaTime]

So yea... we're looking at 50 years or so before this bugger is tamed.

I'll be dead by then!

 

[IntotheBlue03]

I'll be dead by then!

I for one do not think it will take 50 years for us to have a viable treatment (keyword treatment as opposed to cure) to suppress tinnitus. I don't know the other posters' reason for that timeline but I fully have faith that bimodal stimulation will provide substantial relief to many sufferers, the question is just how many and how much.

It's the drug pipeline I have less faith in at this point. Too much red tape, adverse side effects, and greed. Hindered by that "5-10 years away" every decade tagline once funding dries up etc. My money is on Dr. Susan Shore who has at least demonstrated some level of efficacy whether people think the sample size was too small or not for her first trial. 20 years of university research with rigorous double blinded clinical trials and participants in our own community having some result makes me more confident.

Again I stress the word treatment. I'd have no problem incorporating a device into my regimen to routinely suppress tinnitus at this point, and then holding out for a cure.

 

[Survivor234]

I for one do not think it will take 50 years for us to have a viable treatment (keyword treatment as opposed to cure) to suppress tinnitus. I don't know the other posters' reason for that timeline but I fully have faith that bimodal stimulation will provide substantial relief to many sufferers, the question is just how many and how much.

It's the drug pipeline I have less faith in at this point. Too much red tape, adverse side effects, and greed. Hindered by that "5-10 years away" every decade tagline once funding dries up etc. My money is on Dr. Susan Shore who has at least demonstrated some level of efficacy whether people think the sample size was too small or not for her first trial. 20 years of university research with rigorous double blinded clinical trials and participants in our own community having some result makes me more confident.

Again I stress the word treatment. I'd have no problem incorporating a device into my regimen to routinely suppress tinnitus at this point, and then holding out for a cure.

I wouldn't be that pessimistic. The drugs will be released. Whether they work or not (as well as whether their outcomes are worth the price) is in the air but they will come out in the near future.

Dr. Susan Shore's device will come out first but that doesn't mean the drugs won't either.

Otonomy's drug I am pretty sure is going to come out. Since Frequency Therapeutics has FDA approval, they're tied with Otonomy. The rest of the other drugs I am not sure about.

 

[IntotheBlue03]

I wouldn't be that pessimistic. The drugs will be released. Whether they work or not (as well as whether their outcomes are worth the price) is in the air but they will come out in the near future.

Dr. Susan Shore's device will come out first but that doesn't mean the drugs won't either.

Otonomy's drug I am pretty sure is going to come out. Since Frequency Therapeutics has FDA approval, they're tied with Otonomy. The rest of the other drugs I am not sure about.

Thanks @Survivor234. I really hope so, just sucks there's so much time until they could be commercialized and brought to market vs what can go wrong.

Really hoping we will have Susan's device to hold us over as a suppression treatment until whichever blockbuster makes it on the shelf.

 

[Sentinel]

That's my guess too, but I don't understand why most of the audiologists (and doctors) I've met have never heard of Dr. Shore or her device or signal timing. Maybe they have seen so many tinnitus devices that they don't want patients to get their hopes up? But like @AfroSnowman, I'm still cautiously optimistic.

The good news is there are at least 8 tinnitus treatments in the pipeline all at various stages. My money is on OTO-313 based on some positive things I've heard from people in the know.

I can only speak for the one tinnitus "specialist" that I visited a year ago. But I'll say this:

There are certain people in audiological circles that have zero financial incentive for tinnitus to be resolved in any meaningful way. Take my "specialist" for example. She's a nice lady with a nice office, but she does little more than sell hearing aids and provide knock-off Jastreboff level advice to people at $250 a visit. And this sort of advice is more like "well, your reaction to the sound is your problem". And oh "let me do a hearing test, I'll charge you for too". I've done more research on this particular specialist in regards to her income for this business and let's just say that business is booming and she ain't hurting for revenue.

This lady might have the opportunity to receive Dr. Shore's device given commercialization, but yet when I was there she constantly downplayed any research or treatment efforts. It's not in her financial interest for the problem to be solved, because she can make more off of what she's doing now than whatever Auricle might give her as a piece of the profit for the sale or usage of a device (most likely). She also can charge for TRT sessions and all sorts of other things that may have some utility for some folks, but not for what the majority of sufferers here are looking for.

This may not be the case for the majority of audiological places or doctor's offices in the US, but there are certain corners of this space where the people that claim to be helping are not fundamentally interested in the problem being resolved, as that would represent a loss of income for them.

I'm sorry to distract from the main component and discussion of this thread regarding the somatic aspect and the device but I felt that this needed covering because if I could go back and get my money back from her I would. That being said, OTO-313 helped me a great deal with part of what I hear in my right ear.

I remain cautiously optimistic about Dr. Shore's device, I think it'll help me with the center of the head high-frequency hiss that keeps me from sleeping.

I love all you you guys and girls and I wish you peace from this nightmare.

 

[Bambam0]

There are certain people in audiological circles that have zero financial incentive for tinnitus to be resolved in any meaningful way.

Just remember, Mr. Market will always win in a free market system. It's important we all push "specialists" to learn about these treatments. It's in their best interest to become early adopters and capture the upside in providing treatments, if they indeed are effective. We can all be their first customer and evangelists.

I recently had the opportunity to chat with a tinnitus researcher at a large hospital system. She is a principal investigator of studies and she didn't even know about Lenire/Auricle. Everyone is looking through their own selfish lens. It's important we do the same

 

[GlennS]

It adds hope.

Did hopium help in retrospect with the Lenire thread? I'd like to latch onto facts rather than faith.

 

[GlennS]

I don't want to sound disrespectful or anything but doesn't anyone else find it odd that this whole forum has based all the successful devices, research etc on only and exactly two people's testimonials (@kelpiemsp and @linearb if I am not mistaken)? I have never heard of anyone else getting cured or even just slightly better other than those two people. It can be literally anything, even just time that cured them. This is my personal opinion.

There was also a member by the name of @Clare B.

 

[OnceUponaTime]

This may not be the case for the majority of audiological places or doctor's offices in the US, but there are certain corners of this space where the people that claim to be helping are not fundamentally interested in the problem being resolved, as that would represent a loss of income for them.

Boy is this sentence completely true!

 

[OnceUponaTime]

I recently had the opportunity to chat with a tinnitus researcher at a large hospital system. She is a principal investigator of studies and she didn't even know about Lenire/Auricle.

Every doctor, nurse, ENT, audiologist, dentist, pharmacist, person I have talked about tinnitus have never heard of Lenire/Auricle, Susan Shore, Tinnitus Talk community, Prof. Thanos Tzounopoulos, Otonomy, etc, etc...

I mean Dr. Shulman in NYC who has been "treating" tinnitus his entire career didn't know who Susan Shore was!

 

[IntotheBlue03]

I remain cautiously optimistic about Dr. Shore's device, I think it'll help me with the center of the head high-frequency hiss that keeps me from sleeping.

That's EXACTLY what I think as well @Sentinel. Really hoping for those of us experiencing this centralized tinnitus that I've heard referred to as "brain tinnitus" respond well to DCN treatment. Again just for reference I've heard @linearb's tinnitus is also high frequency and centralized at 14 kHz and he responded to treatment. That's the same pitch frequency I have and it's in the hiss range for sure.

 

[Sentinel]

That's EXACTLY what I think as well @Sentinel. Really hoping for those of us experiencing this centralized tinnitus that I've heard referred to as "brain tinnitus" respond well to DCN treatment. Again just for reference I've heard @linearb's tinnitus is also high frequency and centralized at 14 kHz and he responded to treatment. That's the same pitch frequency I have and it's in the hiss range for sure.

Yes! Some of those ACRN tracks on YouTube work wonders for my centralized noise.

Most sound horrible and are way too loud for us but a few I've tested are quiet, not grating and work well.

That combined with Dr. Shore's research and the electrical pulse aspect might be helpful.

 

[kingsfan]

So this is only supposed to help the tones which we can modulate? When I open my mouth wide, jump up and down, or bend over it creates a completely new tone that isn't one of my constant ones.