New University of Michigan Tinnitus Discovery — Signal Timing

Anyone have a clue if Dr. Shore's will work for Visual Snow Syndrome induced tinnitus? It's purely neurological since it's a neurological disorder but it seems to be somatic so I'm not sure.

 

Theoretically, if tinnitus is eliminated - so will visual snow caused by hyperactivity in auditory cortex. It seems like the brain has some degree of ability to mitigate “noise”.

If all of these “theoretical treatments” will “cancel” out tinnitus, then, with time, plasticity of the brain will change (re-adapt) to what it once been in terms or not perceiving tinnitus, its capacity to mitigate certain degree of “noise” will be regained and visual snow may fade away.

I mean all this is hypothetical and theoretical, however, if you think about it - it makes sense. This is all highly dependent on how myriad of variables and their values that affect your brain’s chemistry did get mixed in ones exact case. This is why some get very little to no tinnitus when losing a good amount of hearing, while others with slight hearing loss get an airplane in their ear. Same goes with visual snow.

I do have visual snow myself and the onset was after I got tinnitus. I’m lucky that for me my visual snow is mild and I have habituated well to it so it does not bother me at all.

If I only had visual snow and no tinnitus - I would live happy lmao, but as you see that ain’t the case.

Long story short - If Dr. Shore's device does indeed work, then suppression of visual snow may be a positive side effect of this treatment.

 

I just think it's a bit complicated since in visual snow syndrome the visual pathway is also affected. From my understanding the visual (LGB) and auditory pathway (MGB) are interconnected by the (TRN) to the neocortex a.k.a the visual and auditory association cortex where information is actually processed. The thalamus acts as a gatekeeper for information. Normally this should work fine I guess but the brain simply can't handle unfiltered information or at least if a lot of it is still in its initial phase. Result would be hyperexcitability and hypermetabolism.

Thalamus seems to also influence the salience network that is surprisingly also disrupted in both neurological conditions.

Interestingly, they conducted studies that confirmed thalamocortical dysrhythmia and cortical oscillatory dysrhythmias within the thalamus, in both, visual snow syndrome and tinnitus, the normal GABAeric Inhibitory response should be a threshold of 8-13 Hz within these areas but is for some reason reduced to 4-7 Hz, and theta doesn't have a suppressive component on neural information like alpha. I just have no clue why this happens (maybe a lack of GABAeric Interneurons? Neuroinflammation TNF-a? Cytokines?). In theory, the Susan Shore device "should" help if it's at least somatic since your nerves feed into the DCN (brainstem) all the way up --> IC --> MGN/TRN --> PAC1.

I'm not an expert either but I believe it could at least, let's say, reduce it by 50% if the Dorsal Cochlear Nucleus (DCN) is involved because it's an upward feedback loop.

To be honest, what Dr. Dirk De Ridder said is the most believable thing I've heard about tinnitus in recent years. I myself also do not think that for people with hearing loss, hearing regeneration is the solution, at least not in theory. We will most likely be able to regenerate hearing to full extend, but how should that reverse such complex things that are going on in the brain, especially since it's all built on neuroplasticity.

I myself have like 0% hearing loss, as nothing is shown on the OAE, it's simply neurological in my case, so I have no hope for Otonomy etc...

I think visual snow syndrome isn't the issue, it's the bilateral high pitched retard in my brain. Yeah, I'd love to experience some silence or peace, times where it's very quiet make me actually even more sad, because I can very well imagine silence. Mine fluctuates a lot throughout the day so I don't know if there is a muscular component e.g., TMJ/D / ETD / Cervical Spine (Atlas, C1,C2,C3)

It would make me happy honestly, but even if it doesn't, there is still DBS, VNS and Neuralink. There is also neuro visual rehab therapy that seemed to work for visual snow syndrome induced tinnitus.

 

As far as my own level of hope on neuromodulation, I feel the burden of proof is to show that ANY of them work in a meaningful way (including Shore's). I got excited about this on the basis of only a couple testimonials from Tinnitus Talk members. The fact one of them was treated (and claimed all but cured cured) by the Minnesota device which isn't even being developed anymore is a red-flag. Either these treatments are fool's gold or those running these R&D efforts are so inept, unmotivated, and/or underfunded that nothing will ever become of them.

Commercialization (i.e. Auricle) being used as a sign that the treatment is real means nothing as we've seen via Neuromod/Lenire.

The only thing that's going to matter in the end are end-user testimonials--real ones, not paid actors, not wishy-washy stuff, real credible testimonials.

 

It's funny because all other disgusting tinnitus cure scams are all "commercialized" and somehow their companies get to be unregulated, free to sell their shit (ab)using the sufferers' pain. Paid actors and fake testimonials included.

 

I'd argue that the only thing that's going to matter is actually positive results on their (double-blind, sham-controlled) recent trial. Patient testimonials are useful but not reliable enough to prove efficacy.

 

Unfortunately, as the DeSyncra device FDA approval and placebo controlled study showed, not even positive results on trials guarantee anything. Agree that this is better than a few random testimonials, of course, and the Shore study should be of higher quality. But if a critical mass of positive testimonials (thousands) started to build, I would feel reassured, because trials can be designed to be successful by engineering the patients selection, and their results be totally misleading.

See again DeSyncra, or positive studies with placebo controlled trials for Sertraline or Pramipexole, to mention just a few examples, that passed placebo controlled trials in studies but have had little success in real life.

I hope, for humanity, that in the next few decades medicine will become a real science, rather than the pseudoscience it is now (compared for example to physics). Computational advancements, nanotechnology, genetic and genomic studies and individualized intervention at genetic level could bring us there, maybe. This is not a criticism of all medical doctors, quite a few are doing real miracles in the context of the current discipline.

 

After the seemingly credible trial data from Neuromod turned out to be BS I'm not sure any trial data can be trusted. I want to hear from real people some unequivocal stories that the loudness of their tinnitus has gone down, not that they subjectively "feel better" or they are "managing better".

 

But it wasn’t credible data. There wasn’t a control.

 

How about a double-blinded sham controlled positive result that is ALSO replicated by at least one set of independent researchers...!

Would have knocked out Lenire (no control) and DeSyncra (probably not able to be replicated by an independent party - and unlikely that anyone would bother).

 

Dr. Shore's poster presentation summaries are posted, some new research.

https://www.midwestauditoryresearchconference.com

Nothing on the main topic yet.

 

I'll take that seriously when it's accompanied by the entrance of a trial participant into a Tinnitus Talk discussion or interview with Tinnitus Talk staffers.

 

I'll concede that saying positive results on clinical trials are "the only thing that matters" was a little unfortunate. It leaves too much room for misinterpretation (although I still agree with the spirit of it). So let me rephrase it: I think clinical trials are the most important element for proving that potential treatments are reliably effective.

The catch here (which sadly went unsaid in my last comment) is that trial results, in and of themselves, do not guarantee that the treatment will be 1) incredibly effective, 2) drive down tinnitus volume, or 3) will work for the entire population. You gotta take a good, careful look at what the trial is measuring, and who benefited (or not) from the treatment. For instance:

DeSyncra's trial compared tinnitus distress against CBT. If you think that treating tinnitus distress alone is not enough, I fully agree with you.

The pramipexole trial only focused on tinnitus caused by presbycusis. I agree with you that the Sertraline trial seems puzzling to me, but I can't get access to the full trial study so it's hard for me to comment further.

As @Gb3 said, there was no control on that trial.

True, but carefully setting inclusion/exclusion criteria to raise the chances of your treatment being effective is something that literally every single clinical trial will do (and they should). These criteria are available for everyone to pick apart though; while I see what you mean by saying they're misleading, they're pretty transparent. That is the greatest asset of clinical trials: all the information is there to be scrutinized. You can't do that with patient testimonials.

To summarize, my last post here may have given the impression that I think clinical trials are gospel. As I've (hopefully) argued, I don't think that is the case at all, but I do think that swearing off clinical trials, like, as a concept, is throwing the baby out with the bathwater. The way the research is going, it's becoming almost certain that upcoming tinnitus treatments will only work for some people and not for others, so getting used to reading trials to gauge their potential effectiveness to your etiology is a necessary skill to have.

I fully agree with this! Patient testimonials help us figure out what works and what doesn't (and for whom). All I'm saying is that I would much rather take a critical mass of positive testimonials after a successful, well-designed trial rather than followed by no trial at all. You can see the effect of putting too much weight on testimonials alone by browsing the alternative treatments section on this forum, where you could probably find a report that someone's tinnitus was helped by pretty much every single thing on this planet.

 

I agree with this, although no alternative treatment has a critical mass of thousands of testimonials, only very few. Current medicine needs placebo controlled trials, agreed, we only have to accept their limitations. A sizeable amount of testimonials can cement the trial positive results and maybe reassure patients that the treatment works beyond the trial selection criteria.

 

Agree, independent replication is key. But with Shore device, wouldn't that involve patent infringement? Or could they do the study only for replicating results? But with what economic incentives? I don't see this working.

We had cases in the past of positive trials that were later debunked by independent verification, like acamprosate. But with patented medical devices this sounds difficult.

 

Well, perhaps this trial is designed to be as accurate as possible? Dr. Susan Shore seems like a person that would sacrifice time to make things more accurate for the sake of science.

I mean, if not for the person whom setup Auricle, she may still be just doing research and she would have her pre-clinical over and over until she figures it out 1000% with variables like whom this will work for vs whom not? Maybe she isn’t much in to business at all...

In terms of what treatments will work for whom:

There are gazillion variables that define how some one got tinnitus (acoustic trauma, nerve damage outside cochlea, drug-induced, etc) and as we see, companies have different approach on these.

• Company type A is working on hair cell regeneration
• Company type B is working on synapse regeneration
• Company type C is working on reprogramming auditory cortex to calm down tinnitus

This is all great, but no reliable imaging diagnostics being available/developed at the moment to see what one has issue with: synapses vs hair cells.

I think in the beginning it would be important to see what needs to be done first for the individual:

Regenerate synapses, then regenerate hair cells or vice versa?

Dr. Susan Shore’s device may be a universal treatment of tinnitus that perhaps if used right when tinnitus appeared - may alter the outcome where after some amount of treatment sessions individual may not experience permanent tinnitus, yet still have some degree of hearing loss.

I do believe that getting tinnitus as a symptom under control with some sort of treatment, that, okay may not restore hearing but gives one ability to “vanish” tinnitus, is extremely important.

In the end, one way or another it is going to be mono treatment for some and combined for others. That is until there is a pill like one from Hough Ear Institute that claims to restore hearing thus getting rid of tinnitus, but I’m yet to see it moving anywhere...

 

It's presentation day today I believe.

 

Shore is presenting as we speak, first one that gets a link to the summary, a livestream, press release etc gets a cookie.

 

Just sent an email to a conference staff member asking if Shore's talk was recorded (and if the recordings will be made available to the general public). Will let you all know if I hear back.

 

Just heard back; unfortunately, they didn't record any sessions at the conference.

 

Why would this meeting would be “behind closed doors” without any recording whatsoever? I am surprised that there was no livestream...

 

Thanks for the efforts. I do hope there is a slidedeck or presentation to share.

 

I don't think there's much to read into here. This was a small research conference, it's pretty typical for those to not be recorded.

 

Well at least we know she was there, first row third of right

 

Susan Shore's reply when I asked her about the content of her presentation:

„This was just a review of already published material. As stated in our group email - no new news yet.”

 

My 6 stages of grief.



What does she mean by no news as of yet

Guys, for our sake, let's slowly back off this, and look at other trials.

I'm not going to lie, the fact they always kept stressing somatic tinnitus and not just chronic tinnitus always gave me doubts.

But hey at least she replied so there must be some confidence I guess...

 

@KoolKat, somatic tinnitus can be chronic too. We’ve been over this a million times. Now if she said intermittent, then I would understand what you’re saying.

 

@lolkas, there was a presentation recorded a while ago, and since it's forever on YouTube, I don't think they want to have a repeat. Search The Neural Bases and Neuroengineering of Tinnitus on YouTube. If Prof Shore is saying no new news, just presenting what is currently available in research, I take that as the protocol hasn't changed. There is a shock, and beep, and some interval between the beep and the shock.



It would be really great to see some device that can read, in real-time, changes occurring in the auditory complex, and then pair that with bi-modal. My understanding is that the brain is undergoing some desynchronization, so the area that is overactive in the brain should quiet down, and there are tools out there that can detect these things. The technology does work, but I think the problem is that each person is different, and finding a one size fits all solution, may not be practical. If bimodal works (I believe it does), then I think the hyperactive areas of the brain should be able to be pinpointed, and then the effects of bimodal should be clearly apparent. If new tones show up, which has happened with Lenire, then that should also be seen.



Just my 2 cents.

 

Hey @Warchop, thanks for your reply!

Perhaps she figured out some sort of “norm” to which her device brings auditory cortex to? (Or at least is aiming to)? I mean think about it, if there is “a” state of auditory cortex which is “normal” and “b” state which is “altered”, perhaps she figured out a way to “bring it all down”, i.e. regardless of the frequency on which tinnitus is perceived in?

This treatment is aimed to deal with tinnitus, not with underlying conditions (which is what we need at least for the very beginning) and perhaps that is exactly what she may have figured out?

Otherwise the only stuff will cure tinnitus for good is regeneration of hair cell/synapses. And for now some companies did figure out compounds that are capable of doing so, dosing and most important delivery is something these companies are struggling with.

P.S.

Honestly, if it would be like “hey take this pill daily, your hearing will regenerate slowly” I would sign up for that, but as far as where we are right now, only FX-322 was able to somewhat demonstrate ability to improve speech clarity which comes from 8 kHz+ on the frequency side. I hope that FX-345 can successfully penetrate down to 4 kHz and below so that actual hearing also would recover.

Hair cells / synapses recovered = fixed feedback to the brain = no tinnitus.

 

Maybe, but I sort of suspect that hearing loss is a triggering event that creates a cascading response of confused neurons. Undoing the triggering mechanism won’t necessarily undo the subsequent brain scramble.