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  1. C

    Working Towards Better Healthcare Interventions for Tinnitus: a Brain Stimulation StudY (WHITBY)

    @Nick47, I didn’t ask, to be honest. For me, it depends on when the trial starts. I was informed it could be December, or it could be January. I’m not sure how feasible December will be, but if I manage to get in, I don’t think I’ll be able to tolerate 85 dBA. If that’s an issue, I’ll just see...
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    Working Towards Better Healthcare Interventions for Tinnitus: a Brain Stimulation StudY (WHITBY)

    I contacted the study organizer, and there is an optional MRI component. Some of the hearing tests reach 85 dB, which might be an issue for me, but I’ve applied to be part of the trial.
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    New University of Michigan Tinnitus Discovery — Signal Timing

    I suppose there's no point in worrying about this, as it seems years away from becoming a consumer product. If it ever does come out, we'll quickly be able to determine who it works for and how. Until then... 🤷‍♂️
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    Sound Annoyance and Worse Tinnitus After Out in a Loud Venue (Measured at 97 dB) for One Hour

    Try not to blame yourself too much. I had a setback recently, which resulted in me taking seven weeks off work. My "crime"? Going to a pub with friends, even though I had my earplugs in. This condition is so hard to live with and manage. You do things that everyone else around you does, but for...
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    Introducing Tinnitus Quest

    I believe that establishing trust and visibility in actually taking action is key. A lot of people suffer from tinnitus. I regularly donate small amounts to charities each month that don't directly affect me, so I've started giving a small amount each month to Tinnitus Quest as well. If a decent...
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    Hi zigs, I did try to give more comprehensive reply but word count limit means short version...

    Hi zigs, I did try to give more comprehensive reply but word count limit means short version. I am doing a bit better with the pain still very limited in activities I can do, missing parties, school events, cinema, play dates .. but gone from being able to do nothing where you sound like you...
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    Introducing Tinnitus Quest

    I just wanted to say a big thank you to everyone involved with Tinnitus Quest. I really hope you succeed with this initiative. It's clear that tinnitus receives little funding, and patients are often dismissed by doctors who lack knowledge or are taken advantage of by people promising cures...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    Wow, what a complete disconnect and utterly cold response to the community they are supposed to be focused on helping. The more this goes on, the more surprised I'll be if this device ever comes to market. At their pace, regenerative treatments will be available before this. All the years of...
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    Cilcare's CIL001 Targets Cochlear Synaptopathy — An American/French Collaboration

    Does anyone know how Cilcare's CIL001 differs from Otonomy's research? It seems to be the same molecule that Otonomy tested.
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    New University of Michigan Tinnitus Discovery — Signal Timing

    I have read that, and it still makes no sense. They are silent, so there is no speculation or disappointment. I don't really think that is working out. I would argue that their silence, lack of transparency, and zero communication are causing more speculation and disappointment. IMO, if the...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    If they don't have enough funding or resources to deploy a website, they are the wrong people. I am sorry, but I still don't understand why there is so much secrecy. Is there any news available on Auricle anywhere, including financials, staffing, and investment partners? What harm could come...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    But what does "by the book" mean exactly? I mean, they have a working device or so they claim, but they don't have the capacity or funding to even start the processes outside the US, have no devices manufactured, and have no public information for possible investors; I'm sorry, but no. If you...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    I have to agree with @Dkellz. People are suffering terribly, and here we are having this device that has been researched for over 20 years and is supposedly proven to work with the science to back it up, but then when it's announced that it works, it's just put on a shelf to collect dust with...
  14. C

    Akouos — A New Company Focused on Genetic Hearing Loss

    Didn't Frequency Therapeutics and CNN or someone release a video about how a deaf teacher had their hearing restored after an injection of FX-322 prior to their official trial's failure and stock plummet? I'm sorry but I just find it impossible to get excited about or to trust anything in this...
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    Inner Ear Hair Cell Regeneration — Maybe We Can Know More

    Well that's cheered me up for the start of the weekend o_O
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    New University of Michigan Tinnitus Discovery — Signal Timing

    My personal experience of ENTs and audiologists is that they are all useless. In the beginning I was really frustrated with them. But the reality is everything they said was true; there is nothing that can be done and there is no treatment, so it's better to get used to it... A few years ago I...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    If the device works, all ENTs will know about it :) Hopefully we don't have that much longer to wait till we find out. I refuse to get my hopes up believing in something, I won't believe in any treatment until is available for public use with lots of people reporting success, including...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    To be fair, when I saw ENTs and audiologists, they said there was no treatment. I refused that and for years have spent countless hours trying to find solutions, but in the end, and as far as I can see, that statement is correct. All the potential treatments we have got previously excited...
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    Hough Ear Institute's Hair Cell Regeneration Project

    Would it really be so hard to find investment to push this to market if there was compelling evidence that it worked? I mean didn't the USA Govt also give them funding? It just makes no sense at all. Is this just utter incompetence by the people in charge or a big con to try to stay relevant...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    Well, this topic is a decade old. I don't see how things can move much slower. There doesn't exactly seem to be a rush to get the treatment to people, especially if this thing actually works. I guess we wait for the peer review, then something else, and be lucky to to find out in 2025 if it...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    If the device worked, wouldn't things be progressing at a quicker pace? I fear there's another 10 years of research needed before we get anything (as always).
  22. C

    Hough Ear Institute's Hair Cell Regeneration Project

    So Hough Ear Institute spend years developing something that they claim works and then they license it to a company that does nothing to drive it forward or get it to market. Why don't they be more careful about how / who they license it to? Surely they can stipulate some stuff, like if they...
  23. C

    Frequency Therapeutics — Hearing Loss Regeneration

    I hope not as both drugs failed miserably and didn't do jack. Why waste time flogging a dead horse.
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    Frequency Therapeutics — Hearing Loss Regeneration

    As others have said, I'm angry and sad. This to me is truly shocking that as a business they can act in this way. I mean I wasn't expecting a cure but I was expecting something. I thought some milestone was going to be reached. My expectations were based on what was coming out of the company...
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    Frequency Therapeutics — Hearing Loss Regeneration

    I have to once again think something fishy has gone on here. How in the hell was that CBS piece done? Frequency Therapeutics pushed it out to get a bump up in the share price. Those that were in the know cashed in before the results were published and the company was done. They must have known...
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    Frequency Therapeutics — Hearing Loss Regeneration

    If FX-322 works to any extent, they have done something that has never been done in our history before. This would be a breakthrough. It would show that it is possible regenerate hearing. It could be a Pandora's box accelerating development in this field. This is what I really truly hope for; I...
  27. C

    Frequency Therapeutics — Hearing Loss Regeneration

    I just hope this is true and this drug works. Please let there be some good news in 2023 for us all.
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    New University of Michigan Tinnitus Discovery — Signal Timing

    Just get the device to market, then we will see if it works or not. Such a limited test group. I will not believe anything until we start getting lots of people on here saying it's worked for them.
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    From my experience seeing a few audiologists and ENTs via NHS most of them didn't even know...

    From my experience seeing a few audiologists and ENTs via NHS most of them didn't even know about it, one ENT when I said noise was causing me pain said to me "your strange do you think you were abducted by aliens", and after being discharged from Nottingham care I have come to conclusion that...
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    No sorry didn't find any.

    No sorry didn't find any.
  31. C

    Inner Ear Hair Cell Regeneration — Maybe We Can Know More

    That's all great and good but you still get told the same thing. On my onset of tinnitus worsening and after reading his books, I desperately contacted Dr. Baguley who kindly responded and recommended I try to get an appointment at Nottingham. After waiting 18 months and going to my...
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    Frequency Therapeutics — Hearing Loss Regeneration

    I wouldn't read to much into the stock price. It was over $50 at one point before the poor results. People always end up making money whether this stuff works or not, if they are smart (rules me out unfortunately). I got a few stocks when it was around the $1.40 mark so I really hope it works...
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    Frequency Therapeutics — Hearing Loss Regeneration

    The way these drugs are going, I won't believe anything until it's released to the public and is working. The Otonomy trials have made no sense whatsoever with promising results, followed by nothing, and I fear this is going to be the case with Frequency Therapeutics as well. A couple of years...
  34. C

    New University of Michigan Tinnitus Discovery — Signal Timing

    Personally I wouldn't care if I needed to plug myself in for a few hours a day. If anything works that's not surgical and doesn't have substantial risk of worsening, then it's a win. I'll take a pill, get an injection, be electrocuted, whatever.
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    Hough Ear Institute's Hair Cell Regeneration Project

    So they have this magic wonder drug that works, it allowed someone who was homebound with their tinnitus become a public speaker at fundraising events, but they are unable to find any company to take the drug to market... I mean come on, why wouldn't a pharmaceutical company want a proven...
  36. C

    Hough Ear Institute's Hair Cell Regeneration Project

    Hough Ear Institute seems fishy as hell with their fundraising and how they have managed this whole thing. Nothing with their timelines, management of the drug, getting funds or struggling to raise funds has made sense. I thought the US Government backed them at some point? God I wish there...
  37. C

    New University of Michigan Tinnitus Discovery — Signal Timing

    It doesn't work. They just need time to figure out how to deliver the results so they can get funding for another decade to develop V2. Please let my cynicism be entirely misguided.
  38. C

    Otonomy OTO-313 — Treatment of Tinnitus

    If it did something, it would have made it to Phase 3. No way Otonomy would abandon it and basically sink their company if it did something. Also the trouble with these readouts is they are from short term tinnitus sufferers who can have natural massive improvement from initial onset... Pair...
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    Otonomy OTO-313 — Treatment of Tinnitus

    I think they all need to rework their trial designs. Forget about short term tinnitus sufferers who can have natural improvement, forget about people who it's a minor nuisance to. Get people who have been suffering in a living hell for years and get stuff to work for those. If it works for...
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    Otonomy OTO-313 — Treatment of Tinnitus

    Another failure to add to the bonfire of failures. The only thing I look at on the forum is the Research News section under the misguidance of there being some hope of treatment, but with FX-322, this, Dr. Shore being unable to publish any results after a decade of work, it just seems that there...
  41. C

    Gene-Correction Therapy Improves Hearing Loss by 10 Times

    Why do they keep using mice... Seems that everything works well on mice but that's not translating to positive human results. I think these researchers need to pick a different test animal. Give the mice a break :ROFL: :D
  42. C

    Hough Ear Institute's Hair Cell Regeneration Project

    I thought this pill / drug was supposed to be repairing nerve connections. If it's doing that, why would the positive results not last?
  43. C

    Hough Ear Institute's Hair Cell Regeneration Project

    Come on Oblato, get a move on :mad: :eek: :D
  44. C

    New University of Michigan Tinnitus Discovery — Signal Timing

    The bottom line is that no one can give any meaningful answer to any of these questions. I am frankly amazed the people contacted had the time to respond at all, but think it is because they are obviously caring about the plight of what people go through and have seen people struggling. As...
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    New University of Michigan Tinnitus Discovery — Signal Timing

    No one knows anything at this point about any of these even the clinicians developing them cannot answer, so no one on here can answer that question it is all speculation. We won't know anything at all until the clinical trial results, but even then I think we will only start getting answers if...
  46. C

    Frequency Therapeutics — Hearing Loss Regeneration

    Wasn't that only after the initial safety trial though with a handful of patients? Since then there had been no mention of tinnitus? Or did I miss some other news? I just cannot fathom that they wouldn't say "hey you know what, during our trials we had a few folk who reported an improvement in...
  47. C

    Otonomy OTO-413 — Treatment of Hidden Hearing Loss

    Unless it actually worked, I think it wouldn't be too hard to measure if people said "ooh, I don't have tinnitus anymore." I do think with a lot of these drugs it's a shame there's not a scatter gun approach at the start. Get a large group of people with different issues then narrow stuff down...
  48. C

    Still Alive and Doing Better! Hyperacusis and Pain Have Reduced by About 75%!

    Thank you for posting this. It has really given me some hope in a dark time. This Christmas has been very difficult and isolating. I am currently suffering from pain 24x7 and am in constant fear of my 3-year-old daughter which is a horrible place to be. I used to love Christmas loved seeing...
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    Frequency Therapeutics — Hearing Loss Regeneration

    From the Tinnitus Talk Podcast interview eons ago: "Carl: Again, we don’t have data. Certainly there is anecdotal reports as patients have come back and visited with ENTs when they have had conversations with them about how they are doing. Some of them have offered that they have had...
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    Frequency Therapeutics — Hearing Loss Regeneration

    But surely an improvement in tinnitus would be proof that something positive is happening in the ear. I mean if someone said after their injection they had a 3 dBa improvement and an elimination of tinnitus I would be more impressed with the elimination of tinnitus. I think the only reason to...
  51. C

    Frequency Therapeutics — Hearing Loss Regeneration

    With all these additional trials has there been any mention of tinnitus at all. Before with the first trial with just a handful of people they said that they had some anecdotal reports of tinnitus improvement. Now after all these trials with hundreds of patients and where they actually opted to...
  52. C

    Hough Ear Institute's Hair Cell Regeneration Project

    Just don't get what's happened here? Hough Ear Institute took donations of people to develop hearing loss treatments, now that's shelved and it's a cancer drug?? Or are they still developing it as a hearing loss / tinnitus treatment?
  53. C

    Frequency Therapeutics — Hearing Loss Regeneration

    I'm sorry though it's not really people getting ahead of themselves. Did you hear the interviews with Carl, do you see the Twitter feed from FREQ? They don't exactly market themselves by saying that we are hardly going to do anything, that the goal is that we have really minuscule improvements...
  54. C

    New University of Michigan Tinnitus Discovery — Signal Timing

    Well I really hope it is better than 2021. In 2020 were were waiting in anticipation about the results of FX-322. I really thought this time last year that some treatment was going to be on the horizon in a short time frame and there were a bunch of people going around that had got relief from...
  55. C

    Otonomy OTO-313 — Treatment of Tinnitus

    It is always strange with these trial designs, I mean why not start with shotgun approach and start to see different groups to get an idea of who it's helping and then narrow it down. Surely that would save a lot of time. Could be that it works not quite as expected but with such narrow starting...
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    Otonomy OTO-313 — Treatment of Tinnitus

    Is 43% considered a good result? Not that I'm pessimistic or anything :confused: But if only 43% got an improvement and this is their ideal patient in the acute phase, does it really offer much hope to any long term sufferer which we all will be by the time this is released which they are less...
  57. C

    New University of Michigan Tinnitus Discovery — Signal Timing

    Surely they must have some idea of how the thing is performing in the trial. I mean the launch of the company etc. would be pretty poorly timed if the trial results were total flop?
  58. C

    Otonomy OTO-313 — Treatment of Tinnitus

    And this is why the people participating in these trials for the greater good do really deserve some credit. Without the "test rats" there would be no treatments or cures for anybody for anything.
  59. C

    Otonomy OTO-313 — Treatment of Tinnitus

    Really hope future trials might get rid of the unilateral tinnitus requirement and time of onset. I'm just over a year in with bilateral tinnitus. Would be knocking on door otherwise.