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Yes. The placebo effect can be so strong that people who got placebo surgeries think they were cured. It's why it's so dangerous; people don't just respond to it a little, they can respond to it spectacularly. Like you, there's a part to me that thinks that, hey, if it works, it works. I'll...

Same, I reached out to him in June and haven't heard back.

Did your tinnitus go down to your baseline after stopping, or has it permanently increased?

Most welcome! I hope you find it enlightening. I'm sorry to hear that. I have often times found it difficult to process that I have caused and worsened my own hyperacusis (obviously non intentionally), but I have also thought that having this happen to you with no discernible cause might feel...

But that's what I mean. It's also literally what the authors say; I'm using their words. I don't think they're using "threshold" in the sense that it's a super accurate, machine-like system that will contract if a sound is 70 dB but won't contract if it's 69.9999 dB. It just means that your...

It's possible. Although it's also possible that the pain has become centralized and treating the ear may no longer be effective. Who knows! I just wish there was something out there for hyperacusis that wasn't so uncertain. I went down that rabbit hole for a while today, and just ended up more...

I take it you have probably read this paper? An Integrative Model Accounting for the Symptom Cluster Triggered After an Acoustic Shock I'm assuming you have, since a lot of what you're saying is basically what these researchers say as well. Namely, that prolonged stress and hypervigilance may...

Beat you to it! I'm doing that right now lmao. Thanks for pointing me towards it though!

I'm sorry to hear that. Thank you for trying it and letting us know how it went. Thanks for bringing PRP to my attention, I didn't know about it before. I don't think it would do much for the oval and round windows, like you're describing. Silverstein reinforces them, but hyperacusis isn't...

No drugs that are close to XEN1101's formula.

How did it work out for you?

As for Thanos' progress, he is right. Well, sort of. He's right that Thanos is still in the discovery phase with the drug. It's also true that, right now, Thanos doesn't have the resources for clinical trials; he said so himself on the Tinnitus Talk Podcast. Note though that this is very common...

Thanks, man! Let me know what he says, if you contact him, and I'll let you know what they say if I contact them. Hopefully we can both find some manner of relief from this.

A couple of possibilities: 1) Retigabine binded to both Kv7.2 and 7.3 channels instead of only one of them. 2) (and this is the one I find most likely) There was no control. I'm not saying these people were lying. It's just that the placebo effect is insidious and very deceptive. If it wasn't...

What's confusing is that there are lots of folks here for whom Amitriptyline worsened their tinnitus. Clomipramine is also thought to cause tinnitus as well. It's a pity that every single thing that might help hyperacusis seems like playing Russian roulette...

You are correct, but you've linked the wrong study. The one you've linked was a pre-clinical study done in mice. This is the study that reports the result of the clinical trials, which you were referring to. The study actually failed in phase 2, not phase 3, which only strengthens your point. I...

From what I can tell, this is still unclear. People have tried to ask Thanos himself about this, to no avail. Some folks here seem convinced that they are exactly the same compound; as far as I know that assumption is baseless. The difference between AUT00063 and retigabine versus XEN1101 and...

What makes you say that, and where could I learn more about it? Someone correct me if I'm wrong, but I believe the most up-to-date information we have on safety comes from Xenon's press release reporting the results of the phase 2b trial for epilepsy. There were no reports of pigmentation...

That is a very real possibility that we all have to keep in mind when thinking about the potential benefits about regenerative drugs. On the other hand, like the person you're replying to said, even stuff as limited as hearing aids help some people. In any case, this discussion is interesting...

Interesting! Thanks for sharing, I'm gonna send them an email asking about recent developments to the surgery too. I'm also curious if leaving the round window open would make the surgery less effective... judging by his research it seems Silverstein is really zeroing in on stapes hypermobility...

I am once again considering this surgery, now more seriously than ever. My impressions are the same ones already discussed here: many people seem to improve (although how much improvement ranges from minimal to life-changing), some people report no change, and, alarmingly, at least a few people...

Can't disprove you. Can't prove it either. Ahhh, the woes of having no evidence...

I just checked that. Tinnitus isn't explicitly in their exclusion criteria, although they do exclude participants with "any unstable medical condition" (including "clinically significant abnormalities of laboratory tests, physical examination, or ECG") and with "presence of a condition or...

No. The last update from Dr. Shore is still the email she sent in April. From that, we know that their next steps are to 1) publish the data from their most recent phase 2, and 2) to move on with the process of getting FDA approval. What isn't exactly clear to me is when she'll start the FDA...

I find that unlikely, as FX-345 hasn't even started phase 1 yet. But then again, this thread was started 10 years ago, so...

OTO-413 reported positive results not too long ago.

This is something that gives me hope, to be honest. Even better is that all these companies are, as far as I know, working on different approaches to hair cell regeneration, so even if one of them fails, there's still hope for the others.

I can certainly agree with this, and I see this happening with a lot of other treatments here (most notably, recently, with Dr. Thanos Tzounopoulos' drug). I fully expect the process of trialing and refining the drug to be long and tortuous. I think that's a sentiment we both share, we just...

Thanks for sharing! For anyone else following this thread, just note that this study has already been posted here before. Not a dig against you, I still appreciate you for sharing, just wanted other folks to know that this isn't a new paper from Thanos. I agree; plus more treatments are good...

Honest question, though: how is a lack of benefit against placebo across most of these trials anything less than a worrying sign? I understand the etiologies/patient populations are different, and I don't think it means that FX-322 is doomed or that they can't make it work eventually, but I...

I think the point being made is that it's getting harder for them to argue that the reason for FX-322 underperforming is trial design (rather than the drug itself) when the results have been lackluster in multiple trials. I just wish we had better ways of diagnosing the inner ear. Is the...

Always nice to hear positive results! Thank you @Nobody19 and @patorjk for staying on top of all these developments and sharing them with us. I am also very grateful to everyone who participated in this trial. Given how well DB-020 worked, I find it a little sad that participants only got shots...

Why would reorganization be impossible? Just the simple fact that hearing aids suppresses tinnitus for some people shows that the brain does have the capacity to reorganize. Other treatments have shown the same (neuromodulation, brain/ear stimulation, etc). Kv channel activators also show...

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.

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

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.

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...

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.

It's in clinical trials, not available yet. Many people tried an earlier version of this drug, with varying results. Keep in mind the new version is supposed to be more potent and have less side effects.

Yes. TDLR: they are interested in the drug's potential for treating tinnitus but, so far, there are no concrete plans for clinical trials.

The results are ambiguous though, so I don't blame you. According to them, before treatment, persistent tinnitus was found in 100 ears, and after treatment, persistent tinnitus was only found in 50 ears. This to me reads like the treatment eliminated tinnitus in 50% of patients. But then they go...

Would you mind linking the study? I'm having a hard time finding it, and am curious as to how they measured the reduction of tinnitus loudness.

Great find! Thanks for sharing. It seems like a lot of electrical/magnetic ear stimulation treatments are popping up: Dr. Hamid Djalilian is coming up with a device that uses basically the same approach (also in the pre-clinical phase), and OP @InNeedOfHelp found another recent study using what...

This is a pre-clinical study, it's meant to serve only as a proof of concept. Placebo/control group testing is more of a Phase 2/3 thing. Unfortunately, tinnitus is actually very susceptible to the placebo effect. This is one of the reasons why it's so challenging for potential treatments to...

Yeah, reading over the inclusion/exclusion criteria again, I think you're right. Maybe this is another layer of protection against people lying about their tinnitus to enter the trial. Now that I think about it, musicians are uniquely positioned as a profession that 1) is constantly exposed to...

Mammals lack the ability to regenerate synapses in the inner ear. It's just something we can't do. However, some studies have shown that applying a chemical called brain-derived neurotrophic factor (BDNF) leads to synapse repair. This is the idea behind OTO-413, which is in clinical trials right...

Sorry, I forgot to quote that part of your last post, but I meant to say I absolutely agree with you on that! At the end of the day we all want the trial to succeed, and I share your sentiment that keeping tinnitus out of it gives them the best shot. (I'm still puzzled over them excluding...

He did say this: If you mean that he never said if his tinnitus went away eventually, years after the treatment, then yeah, you're right, he hasn't (and he's no longer active here). Great find! Thanks so much for sharing. So it seems they are trying to really zero in on precisely which regions...

Why not? If synaptopathy leads to fewer/aberrant signals being sent to the brain, this could result in tinnitus. One could make the same argument about cochlear injury though: not all people who have hearing loss have tinnitus. Also, tinnitus is associated with getting old; older people are...

I thought I'd do a brief recap on the state of deep brain stimulation trials as of June 2022: There are two trials going on in Europe, one from Maastricht University in the Netherlands, and one from the University Hospital in Grenoble, France. No data is available yet, and it is unclear to me...

I know you're speaking hypothetically, but do you (or anyone else) know if there are any progress in bringing DBS to market? Any clinical trials, companies that focus on it? I'm not caught up at all on that side of the research.

This is likely a direct nod to the FX-322 trials, and has been discussed at length in the OTO-6XX thread (@patorjk did a great job of hunting for and documenting every little scrap of information about it). The short version is that it seems Otonomy wants to try a different approach with...

Great find! They seem to have three drugs in their pipeline, all in the preclinical phase: TT001, previously called AZD5438 TT002, previously called Niclosamide TT003, previously called Piperlongumine Their pipeline page doesn't provide any more information about what each of these drugs...

Even that is pretty amazing considering how heterogeneous hearing loss is. IIRC Otonomy didn't set any specific criteria for how participants got hearing loss or how long they had it for. I'm all for cautious optimism and not putting your eggs in one basket, but I think there's reason to be...

I think you read it right; IIRC it lasted longer for some people, but nevertheless you are right that it doesn't last indefinitely. The hope is that the new drugs would last longer since they're more potent. In his Tinnitus Talk Podcast appearance, Thanos Tzounopoulos also suggested that these...

According to Thanos Tzounopoulos, Kv 7.2 and Kv 7.3 are the most important ones. More sources: Transient Delivery of a KCNQ2/3-Specific Channel Activator 1 Week After Noise Trauma Mitigates Noise-Induced Tinnitus Potent KCNQ2/3-specific channel activator suppresses in vivo epileptic activity...

There seems to be two big theories nowadays: an inner ear theory and a middle ear theory. The inner ear theory says that type II afferents in the cochlea act as pain receptors. This is a relatively new discovery; for the longest time no one knew what these type II afferents did. You can think...

I didn't interpret it like that. I think the 20-30 year timeframe is Djalilian's way of expressing just how monumental of a task hearing restoration is. I don't think it's based on anything specific. I think this is where the opinions of experts and tinnitus sufferers misalign. We can have...

Thank you Brian, for your contribution! I know Dr. Djalilian's device is likely many years away from commercialization, and that we need proper clinical trials before we truly get our hopes up, but several things about his research make me optimistic: They already tested their approach in...

For anyone who's missed it, here's the podcast episode that features this discussion. I gave the episode a pass at first as I find accounts of tinnitus sufferers very distressing (and I'm in a rough patch with my T and H myself now). But if you want to hear Hamid Djalilian describe his research...