MemberAccording to the lore on this forum, FX-322 is going to cure noxacusis and trigeminal neuralgia. New comers will be deceived into believing this is the case.
My Posting Place
- Thread starter threefirefour
- Start date
Phendran
Member
Not too far from it, eh?
I'm happy I got to meet all of you.
You've made me laugh and smile so many times.
Literally no one that I'm aware of (if you have seen this point me to the comment) has said it's definitely the cure for noxacusis.
The discussion is pretty level headed and speculative based on the known components of noxacusis.
Everyone seems pretty aware that noxacusis involves the type 2 afferent fibers and understands the physiology.
What people are hoping is if you stop or reduce the ATP leakage from inflammation and damaged cells, the sensitization of these fibers may normalize with time.
Most everyone on the threads has admitted this is an unknown but there are reasons to be hopeful compared to the past. A lot of people (myself included) think the approach will need to be multi factorial and may possibly even need Nav channel drugs. But improving ATP leakage *should* help at least some considering that purine receptors are involved in the sensitization in the first place.
If any newcomer has the wrong idea and that it's a sure thing, they aren't reading much of the thread.
No, it's a huge shame that more doctors are not proactive. I wish this wasn't the case but I was trying to point out that even in their "laziness" once a drug or treatment comes out, they are forced to get on board.
Just because ENTs are slacking, doesn't mean research is was my point.
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
I agree with you @FGG - nobody has outright claimed that FX-322 will definitively 'cure' noxacusis - there's been a lot of speculative discussions but they've been based on the research that's been established by research teams so we're just trying to work with what we know and put forth possible amateur hypotheses. I mean, even the researchers at the 2017 ARO conference speculated that the regenerative approaches could possibly improve the lives of people with pain hyperacusis so most of the discussion has been pretty measured and not wildly fanciful @Contrast. I do think noxacusis may require more of a multi-factorial approach, as FGG says compared to tinnitus - especially if it's severe and complex.
I swear I seen post somewhere in the giant FX-322 thread, and I even think memes in MPP that speculate about FX-322 being useful for synaptopathy and noxacusis. They also got lots of likes. I believe we need to be in the mindset that we are in a backward ass part of human history and primitive times.
You are free to disagree and act like we are living in a futuristic advance society and a stem cell revolution is right around the corner.
You are free to disagree and act like we are living in a futuristic advance society and a stem cell revolution is right around the corner.
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
People speculating whether certain treatments may be useful in treating these conditions is not synonymous with boldly claiming they are "cures" though.
But FX-322 regenerates the synapses connected to the dead hair cells, so it will help with synaptopathy to some degree. Maybe you're the one who hasn't been reading up on it enough.
Also, FX-322 is not stem cells, it's progenitor cell activation (much safer). And a revolution is around the corner; we're already fairly confident that we can regenerate hair cells and synapses in the lab, it's just a matter of getting FDA approval and rolling it out. A lot of your pessimism is based on dogma rather than fact.
Funnily enough, I'm probably one of the biggest stem cell skeptics on the forum (and probably the biggest Elon Musk contraption one). Progenitor cell activation has already been shown to work though for hearing and (have you listened to the Tinnitus Talk Podcast yet?) Carl LeBel admitted positive anecdotes were the reason they added tinnitus to the experimental outcome measures.
Even the best advocates like Joyce and Bryan don't call out TRT as pseudoscience. They are not part of Academia, nor associated with the TRT guys. So what do they have to lose by publicly advising against TRT for noxacusis?
I wish they put more attention on reporting cases of noxacusis patients who got screwed over by TRT, instead of boring stuff like kiddy headphones doing damage. Ofcourse the latter is important, but it's not as interesting. Joyce has shared with me several cases of people who got screwed over by Jastreboffian advice. Telling them it's okay to go to rock concerts, or loud events. Then they get setbacks! Plus, we all know that Owen guy who Jastreboff said noxacusis was caused by anxiety, LOL.
Several people here... urgentresearch, Autumnly and threefirefour (not the alter) have said the same things as me. That academic research on tinnitus is governed by a Jastreboffian old guard that hates change. Joyce to acknowledges the existence of the "old guard" as well. But she puts a further story to it. She says TRT academics control all the grants, and if they even suspect that noxacusis research is trying to undermine them. They will cut all the grants and the whole field will slow to a crawl. Quote on quote from her, "it's political suicide to label TRT pseudoscience".
I dunno guys, but I'm mc fucking fed up with this.
I wish they put more attention on reporting cases of noxacusis patients who got screwed over by TRT, instead of boring stuff like kiddy headphones doing damage. Ofcourse the latter is important, but it's not as interesting. Joyce has shared with me several cases of people who got screwed over by Jastreboffian advice. Telling them it's okay to go to rock concerts, or loud events. Then they get setbacks! Plus, we all know that Owen guy who Jastreboff said noxacusis was caused by anxiety, LOL.
Several people here... urgentresearch, Autumnly and threefirefour (not the alter) have said the same things as me. That academic research on tinnitus is governed by a Jastreboffian old guard that hates change. Joyce to acknowledges the existence of the "old guard" as well. But she puts a further story to it. She says TRT academics control all the grants, and if they even suspect that noxacusis research is trying to undermine them. They will cut all the grants and the whole field will slow to a crawl. Quote on quote from her, "it's political suicide to label TRT pseudoscience".
I dunno guys, but I'm mc fucking fed up with this.
Yeah I agree that people in positions of power push Jastebroffian research to remain the dominant treatment. It's screwed up and it shows that not even research is an objective field. It also definitely has slowed down tinnitus research over the years, which is infuriating.
I don't think that the doctor medical world has much bearing on the strides that are being made in the field of tinnitus and hearing loss though. If there is an actual effective treatment for hearing loss/tinnitus, it will get lots of press after phase 2 or phase 3. The biotechs would hold seminars to educate doctors on regenerative medicine, as is the case with any new treatment. An ENT would be stupid not to administer the drug since, as we both agree, the largest factor in the medical world is cash, and there will be a line of people waiting to get injected.
I don't think that the doctor medical world has much bearing on the strides that are being made in the field of tinnitus and hearing loss though. If there is an actual effective treatment for hearing loss/tinnitus, it will get lots of press after phase 2 or phase 3. The biotechs would hold seminars to educate doctors on regenerative medicine, as is the case with any new treatment. An ENT would be stupid not to administer the drug since, as we both agree, the largest factor in the medical world is cash, and there will be a line of people waiting to get injected.
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
I think that after a certain point the science will prevail and consequently the whole TRT/CBT industry will start to lose traction. We're seeing this now even with other conditions e.g in the UK they now officially no longer recommend exercise therapy or CBT for chronic fatigue syndrome. This is a big step forward as the "biopsychosocial" brigade have essentially been in charge of CFS research for the past 30 years but their grip on power is now slipping. (I don't have any personal association with CFS - I just find this interesting). I hope that Jastreboff's ideology will go the same way.
But without the hair cell, those nerve connections are useless. Leading to scenarios where tinnitus will be generated anyway. However I do believe that regenerating hair cells almost certainly will help tinnitus. I do not believe that synapses will start regenerating in other regions.
Regarding my pessimism. It's based what Joyce has shared with me, as well as seeing people with chronic tinnitus buying snake oil over and over again. The people who fall for tinnitus scams are not just new sufferers. People who have suffered for several decades made the same mistake on purchasing garbage like Tinnitus 911 and Sonus Complete. Most patients are out of touch with reality, doctors are out of touch with reality, and researchers move at the pace of snails.
Tinnitus probably will have a treatment soon, not because of us. But because the US Military is simply paying attention to the newer technology. In my world view, if it wasn't for tinnitus being the number one complaint of veterans, I think we would be ages behind.
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
But that's why we also have the synaptopathy drugs though - Otonomy, Pipeline, Hough etc. I don't think anyone is banking on hair cell regeneration to be a panacea for all noise-induced damage but a combination of theses therapies should help.
What do you mean without the hair cell it's be useless, both would be regrown. There are other pipelines like Otonomy and Pipeline anyway.
Joyce is super pessimistic and doesn't follow research, she's only considered with practicalities here and now. She's sort of like Michael Leigh on the opposite end of the spectrum.
Military backing definitely can't hurt either.
THANK YOU, LMAO!!!! She doesn't even know about research. It's just doom and gloom
What is wrong with doctors/the healthcare industry? Why should you have to see 10 different specialists before you reach a diagnosis? Why do doctors dismiss and gaslight patients, or treat you like a hypochondriac? Why do we have to go through the medical revolving door just to get diagnosed? And why don't specialists keep up on research?
It's not normal to have to spend thousands of dollars to get diagnosed. Contrast already brought up the question but it's something that frustrates the shit out of me about the medical industry. I have pulsatile tinnitus and would see an ENT, except my spidey senses are telling me they're going to prod around and say it's normal or that I'm being anxious.
It's not normal to have to spend thousands of dollars to get diagnosed. Contrast already brought up the question but it's something that frustrates the shit out of me about the medical industry. I have pulsatile tinnitus and would see an ENT, except my spidey senses are telling me they're going to prod around and say it's normal or that I'm being anxious.
I haven't kept up with much of anything with the dealings of Tinnitus, because I figured nothing groundbreaking would happen this year with everyone's attention/funding/urgency directed to the CORONAVIRUS.
- Oct 31, 2020
- 1,254
- Tinnitus Since
- 9-17-2020
- Cause of Tinnitus
- turning everything up to 11
This is precisely why it's practically mandatory to pay extra for a good PPO health insurance plan too. I can't imagine ever getting decent treatment on an HMO. You have to jump around from doctor to doctor to even get any kind of full treatment for anything other sinus infections or flu.
- Feb 6, 2020
- 971
- Tinnitus Since
- 11/2019
- Cause of Tinnitus
- Noise
- Jan 1, 2019
- 708
- Tinnitus Since
- Steadily worsening since 2018
- Cause of Tinnitus
- Unknown
Joyce is an example of extreme pessimism with zero awareness about regenerative medicine taking place. I am the example of a cautious character that thinks Frequency Therapeutics and Otonomy have a good chance of succeeding, but we need to not act like it's a cure all. I also think Decibel Therapeutics and others are way too far behind the race to say anything.
I think severe suffering for over a decade leads people into that kind of pessimism that we see in Joyce.
I think severe suffering for over a decade leads people into that kind of pessimism that we see in Joyce.
She's just very bitter from having hyperacusis for so many years, I think it's hardened her. I talked with her and she said she has no time for compassion when it comes to talking to sufferers so uh, yikes. I'm just hoping medicine comes out that doesn't put me in a situation like hers, of living in a soundproof box.
Log in or register to get the full forum benefits!
Similar threads
