Hough Ear Institute's Hair Cell Regeneration Project
- Thread starter all to gain
- Start date
Member- Aug 28, 2019
- 1,496
- Tinnitus Since
- -
- Cause of Tinnitus
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@Justin De Moss thank you for fighting our side. I'm convinced before I die that I will hear silence or quieter days again. I'm 62, but after 38 years of this I was starting to give up hope. It's just so reassuring that research is being done. There's an awful lot of us with t and more getting it every day. I really don't understand why more funds aren't available for research. Do researchers consider t to be not as important as research into treatments for cancer etc? I'm reaching the end of my treatment for breast cancer, so no doubt research has helped me get to where I am, but t is totally debilitating some days.
Thank you
Ingrid
No, it's because the medical industry fails to acknowledge the plight of severe sufferers and all funding goes to equivocal bullshit treatments of conditions secondary to tinnitus (anxiety and depression, etc.) through CBT, ACT and TRT.
The problem is victim-blaming. The problem is the ATA refusing to platform any of these promising research companies and help source funds. The problem is medical and political complacency. The problem is veteran associations' power arrangement/hierarchy is extremely bloated and convoluted which hurts our ability to leverage their lobbying power to affect medical and scientific change.
Well, ultimately it's all about money. And this applies to all health conditions that are underserved.
Costs a lot to research, and who wants to pay for research when there's no perfect proof. And that goes round and round.
There is a lot of science out there that doesn't make it as far as it could because no one wants to fund something that is hypothetical, even if the science is really really good. History shows it's an incredibly risky investment.
I'm very grateful for the somewhat recent developments in regenerative medicine and my heart goes out to long term sufferers. I've been on this ride 9 months now. I won't even go there - the what ifs.
The one nice aspect about our tinnitus is, it's not rare, and it's increasing. It's odd to say that, but our odds of conquering it are increasing.
In this case, I disagree. The DoD pays out $2B+ ANNUALLY in tinnitus-related disability alone, and yet awards one SINGULAR grant (thankfully to HEI) to the tune of 1.9 million over 3 years (unclear if this is the total or 5.7 million). The financial incentive for a cure is there—the problem is with the abovementioned therapy practitioners' conflation of the effects with its causes, thereby obfuscating the core problems of tinnitus and eating up all the grant funding because maybe 4 players in the field have a realistic scientific understanding of its pathology.
May I ask you to explain this in a bit more detail? I don't quite understand what you're saying and I'd like to.
Is insufficient funding flowing to companies like Frequency Therapeutics, Otonomy, and Hough? How can the ATA help?
What do you mean by political complacency? Regarding medical, it seems to me that there's a bias that tinnitus is not all that serious, which undermines discovering and administering treatments. Is that what you mean, or... what do you mean?
Are you talking about the VA or other organizations, and how exactly do problems in their power structure hurt our ability to leverage their lobbying power to affect change? What exactly do you mean, and how do you think it could it be improved?
I would genuinely like to have a better understanding.
Thanks.
Nobody has a real understanding of the pathology.
We have some educated guesses, but again. You can't identify tinnitus in the body with current diagnostics. Some similarities but no smoking gun.
I will rejoice the day we do get it. Whoever discovers that will, in my opinion, have 75 percent of the battle conquered. From there we can look into genuine repairs, or targeted masking.
The "theory" is that by promoting CBT or mindfulness training or any sort of coping strategy you are implying that tinnitus isn't real. If tinnitus isn't real, then sufferers are imagining it. This means that they are in some way neurotic and therefore responsible for their own condition. Also, if people believe that tinnitus isn't real, then nobody's going to put the resources into finding "real" treatments. Furthermore, the resources that go into developing/researching/promoting said coping strategies would be better put into funding research into finding real treatments.
I think that's the gist of it. It's the sort of stuff that @JohnAdams used to beat people over the head with all the time and it surfaces on a regular basis.
Having said that @mrbrightside614 seems like a stand up kind of guy from his online persona, but personally I wish it was a thing that would just go away. I do agree that governments should fund medical research in preference to developing new and exciting weoponry for their armed forces and sending their presidents on golfing holidays. Can you imagine the benefit to the population if they can treat hearing loss, dementia...
I don't necessarily take away that offering CBT implies tinnitus isn't real. What's offered is all we have... basically nothing. Coping. Don't forget those methods are used for other health conditions with no cure.
Not saying I don't want more attention and funding for tinnitus though.
It's no secret the profit potential is there,
So will cochlear Synaptopathy and Neuropathy both be addressed with this pill? And along with Otonomy's treatment and Pipelines too?
Also is this Synaptopathy and Neuropathy the only kind of Cochlear nerve damage that can occur from NIHL?
Also is this Synaptopathy and Neuropathy the only kind of Cochlear nerve damage that can occur from NIHL?
HootOwl
Member
Synaptopathy, yes. Neuropathy, no. But most people who have NIHL do not have severe or even mild cochlear neuropathy, if you're going by the definition of neuropathy referring to health of the the SGNs , or the auditory nerve itself.
However there are some genetic diseases and ototoxins that can affect the SGNs or auditory nerve directly. Rinri Therapeutics is looking at true cochlear neuropathy though via stem cell implantation I believe and have shown 40-50% improvement in preclinicals.
Now let's say that I have damage to the SGNs or Auditory nerve. (I suspect I may) Do any of the other upcoming treatments have the ability to regenerate these structures besides Rinri? For example, didn't I see in an animation of FX322, that the nerves regrow and extend to meet the newly grown hair cells?
HootOwl
Member
As far as I'm aware, no. But I'm curious why you think you have damage to the SGNs or auditory nerve. Even profoundly deaf individuals have been found to have nearly the same number of SGNs as hearing individuals at death. The likelihood that you will need Rinri is very small imo.
FX-322 isn't regrowing nerve fibers directly. By causing a new IHC to form the SGNs that you have recognize this and send out nerve fibers to attach to the newly regenerated inner hair cell. In this way we see it as a "pseudo-synaptopathy drug" for those with IHC loss.
This is in contrast to Hough and Pipeline who need your IHC to be intact to begin with. Their drugs stimulate growth of the nerve fibers directly.
But if your IHC are intact the nerve fibers will not be stimulated to regrow and attach. I think the confusion comes from people not really being familiar with the SGNs. These are cell bodies that form a bulb at the end of the auditory nerve and are responsible for generating the afferent nerve fibers you see attaching to the IHC s and OHCs. In cases of synaptopathy the drugs we currently see address only these A1 fibers - not the cell bodies themselves.
I believe I have this kind of damage because my ears hurt without being triggered by sound, and I have pain radiating around the jaw area too. I feel like this is a kind of nerve damage.
HootOwl
Member
And you've ruled out any form of TMJ? I used to get pretty bad ear and jaw pain like what you're describing from even the most mild of clenching - the kind that was imperceivable to me. I don't think that kind of pain automatically means there is direct damage to your auditory nerve. Have you tried a mouth guard at night?
Yes, I have been told by dentists predating any of this hearing stuff that I have mild TMJ. I still get clicks and cracks from it, but I remember hearing that ear issues can cause some TMJ like problems such as jaw pain since all the nerves are so close together. Also when it's cold enough out, I get INTENSE inner ear pain... like near excruciating. Idk if that's connected to any of this though.
That's comforting to hear, because wow does it hurt. That has been an issue that I've had for my entire life. Perhaps my TMJ issues made me more susceptible to getting this tinnitus and hearing loss from noise...interesting. Also @HootOwl, I have never tried a mouth guard, but I might look into it.
TMJ directly can cause tinnitus and sometimes hearing distortions as well. It's at least something you can look into now. You don't have to wait for drugs in trial and, who knows, it may be most of your problem.
HootOwl
Member
Happens to me too but not quite to that level. FGG is right, this doesn't really involve the auditory nerve or SGNs. These treatments should help you.
I agree. I was trying to encapsulate a view held by a significant number of people on this forum.
@FGG @HootOwl
Are there other symptoms of synaptopothy other than speech in noise?
Ever since my trauma I've noticed a reduced ability to hear speech, especially my own voice, in big open areas like the warehouse I work in. If there's no walls/acoustics for the sound to bounce off of it's like my voice falls flat on the floor and is low/muddy. It seems my ears both have difficulty hearing around obstacles now, too. I could barely make out what someone was saying to me standing on the other side of a scissor-lift for example. I also struggle to understand if someone speaks without facing me. It's as if each ear only picks up sound clearly that is coming in within a narrow range of the ear. Before, my ears both seemed to be able to hear in a 360degree manner around my head. Now it feels like my head itself is an obstacle and each ear hears less from the opposite side. If I cone my ears forward I can hear my own voice more succinctly or "together."
Just wondering what structure in my ear is malfunctioning. My audiogram up to 8kHz is normal with slight loss. OHC, IHC, stereocilia, or synaptic loss?
Are there other symptoms of synaptopothy other than speech in noise?
Ever since my trauma I've noticed a reduced ability to hear speech, especially my own voice, in big open areas like the warehouse I work in. If there's no walls/acoustics for the sound to bounce off of it's like my voice falls flat on the floor and is low/muddy. It seems my ears both have difficulty hearing around obstacles now, too. I could barely make out what someone was saying to me standing on the other side of a scissor-lift for example. I also struggle to understand if someone speaks without facing me. It's as if each ear only picks up sound clearly that is coming in within a narrow range of the ear. Before, my ears both seemed to be able to hear in a 360degree manner around my head. Now it feels like my head itself is an obstacle and each ear hears less from the opposite side. If I cone my ears forward I can hear my own voice more succinctly or "together."
Just wondering what structure in my ear is malfunctioning. My audiogram up to 8kHz is normal with slight loss. OHC, IHC, stereocilia, or synaptic loss?
I don't think anyone knows the answer to this, yet. To complicate this, I personally believe that IHC loss or synapse loss can both produce "synaptopathy" symptoms because you are still losing the IHC synapses if the hair is gone, too.
There is no reliable test that I know of, not even using symptoms. The best you can say is that certain things (e.g. noise) are more likely to effect synapses first but even that is not a guarantee i don't think.
It's too bad we can't get Kopke on this thread to ask him stuff like this but as I understand he's super busy (in fact, I will have to look for a new Otologist because apparently he is retiring from clinical practice to focus on research and development at Hough).
I do believe as regenerative medicine becomes a reality, though, we will have a better idea of what structural damage produces what symptoms.
Frequency Therapeutics has privately licensed FX-322 to Astellas Pharmaceuticals, a massive company that I'm thankful bought into FX-322. But this isn't the case for SO many valuable studies and treatments for tinnitus. Hough Ear Institute is a non-profit and faced a huge challenge in taking on investors before entering phase 2, and thankfully they've secured that in Oblato. But this is why capitalism is toothless in many instances. Major players like Astellas determine winners and losers, when there should be better central oversight as to what is valuable in advancing the understanding of disabling conditions' pathologies. Their funding is not a product of the government finding value in them; it's a product of private financial gain. Morally this makes a big difference, but I don't even care to make that argument because I just want every efficacious therapy to be seen through to the bitter end, regardless of how it's financed. Right now the system is paying off in the instances of Hough Ear Institute and Frequency Therapeutics, but what if Thanos can't get an investor for RL-81? The obstacle that the non-profit Hough Ear Institute once faced is a premium example of why this is a problem. Breakthrough therapies are dependent on the capital of wealthy investors to justify their merit. The DoD only paid ONE firm out of 74 applicants a $1.9 million contract, which IMO is disrespectful considering their annual payouts to tinnitus disability. It's just nothing compared to what it takes to get a drug through FDA-regulated clinical trials. It's ridiculous. Genius developments should not be at the mercy of wealthy investors.
What can the American Tinnitus Association do? They can platform the Hough Pill and crowdfund the additional $435k to take it through tinnitus trials. But they refuse and hide behind a facade of "a successful track record with seed grants" matador-esque cookie-cutter responses.
Political complacency = DoD's infinitesimal investment in curative treatments compared to their payouts. The ATA being a do-nothing organization that shares no meaningful dialogue with us. The entire capitalist mentality of "winner (discoverer/investor) take-all." Socialize medicine, fund research 20x over and cut the military budget already.What do you mean by political complacency? Regarding medical, it seems to me that there's a bias that tinnitus is not all that serious, which undermines discovering and administering treatments. Is that what you mean, or... what do you mean?
Are you talking about the VA or other organizations, and how exactly do problems in their power structure hurt our ability to leverage their lobbying power to affect change? What exactly do you mean, and how do you think it could it be improved?
I would genuinely like to have a better understanding.
Thanks.
When dealing with veterans associations, you have to climb the "chain of command." It's not like the president of the main organizations like the DAV, VA, VFW, Wounded Warrior and American Legion have an open-door policy and readily available email addresses to contact them. It requires a lot of planning and waiting and hoping, which is what I'm currently doing with the Tinnitus Talk staff. It's a pretty maddening process and nothing is cut-and-dry.
How to fix it? Make major organizations like every one I've mentioned way more transparent so they can receive input and build better relationships with those of whom they aim to benefit.
I highly disagree. It's most commonly a symptom of hearing loss. Treating that in the currently available ranges has historically rendered consistent results.
You don't have damage at the SGN, even the profoundly deaf mostly don't. You'd need Hough pill, PIPE-505 or OTO-413 to regenerate the auditory nerve, though FX-322's restores HC's do forge new synaptic connections, or otherwise they'd just be vestigial components.
Me2dude.
Frequency recently tweeted an article suggesting that, most of the time, clinical stage biotechs do not have any difficulty getting the funding they need and that the NIH should fund more general "basic science" instead because these are the blueprints research needs to build on before the future profit becomes obvious. It was an interesting take.
If the ATA actually does fund seed grants, that might be a net good to have seed money launching research at the very early stages, too
It is super frustrating that Hough has to raise funds for their pill but because they are a non-profit, but they might be the exception and not the norm. They might not have the same kind of relationship with biotech investment funds, etc.
All you would need is one wealthy donor with tinnitus to fund the half a million, though, perhaps something like the Gates Foundation or an individual philanthropist who has tinnitus who isn't aware of this drug might help. I wonder if a musicians' organization even would be interested in knowing about the pill.
I so totally agree with you on organizational transparency, though.
That's a bit of a reach. Yes, a common correlation of tinnitus sufferers is hearing loss. But that's not the rule. Stress, TMJ and ototoxicity are causes as well. Not to mention you can have hearing loss and no tinnitus. Therefore nothing is mutually exclusive.
"Treating hearing loss in the current available ranges has historically rendered consistent results". Currently available meaning hearing aids and results meaning it doesn't work? What are you getting your info from?
- Dec 21, 2019
- 319
- Tinnitus Since
- 2014, 10/2019
- Cause of Tinnitus
- School Band, Noxious Car Radio
Facial pain radiating from the ear is a standard hyperacusis symptom. The hyperactivity of the middle ear muscles (the clicking and popping and fullness TTTS type stuff) aggravates the nerves that signal these muscles.
Read more here if you'd like: https://hyperacusisfocus.org/research/symptoms/
Avoid coming up with your own theories for your symptoms. I spent a month worrying that I broke my ossicles, I actually had major fluid build up. Good research keeps you sane!
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