I'm afraid it won't help tinnitus. Or if it does, what kind of tinnitus might it help? Would it help noise-induced (earphones) tinnitus? Personally, I hope so, but I remain cautious.
Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
- Start date
Frequency Therapeutics: Releases a picture on Twitter.
Me: Furiously trying to read everything on the computer screen and desk.
Me: Furiously trying to read everything on the computer screen and desk.
Member- Feb 14, 2020
- 1,630
- Tinnitus Since
- 1-2019
- Cause of Tinnitus
- 20+ Years of Live Music, Motorcycles, and Power Tools
It seems like everyone is too concerned about whether FX-322 "works or not" for hearing loss and tinnitus.
Early data and mentions from the firm indicate that it works, as long as the cause in sensorineural.
The question we need answered is "how well" does the dose schedule work to treat tinnitus?
Early data and mentions from the firm indicate that it works, as long as the cause in sensorineural.
The question we need answered is "how well" does the dose schedule work to treat tinnitus?
Keith Handy
Member
- Jan 5, 2021
- 302
- Tinnitus Since
- 11/2020
- Cause of Tinnitus
- Stress + sleep deprivation + noise
No joke. A job you can do without concentrating too hard, in an environment that gives you hope... the sufferer's dream job.
If it restores your hearing, I am sure that would have a positive effect on your tinnitus. It wouldn't make logical sense if it didn't.
Eh he is the CEO. Now if that was on top of the CMO's desk, it would be more of a thing.
They have to remain profitable in order to make money. That is what I am saying about feet dragging. I have never worked for a company that wants to delay a launch; ever. I can't imagine they will delay anything being they want their product out to make them billions in revenue. That is why I am shocked by Otonomy and their decision to delay things. Seems silly to me.
That's true. On the one hand, there are people who were deaf, got a cochlear implant, and some of those people's tinnitus went away, for others it didn't. Maybe those whose tinnitus didn't go away had high frequency hearing loss, which cochlear implants don't cover.
But on the other hand, what about people who were deaf and developed tinnitus after the activation of a cochlear implant? That is weird, isn't it? And the tinnitus remained even after using the cochlear implant for the long-term, so there would have been enough time to adjust the device and erase any bad plasticity that could have taken place in the beginning of the cochlear implant activation.
- Feb 14, 2020
- 1,630
- Tinnitus Since
- 1-2019
- Cause of Tinnitus
- 20+ Years of Live Music, Motorcycles, and Power Tools
How do we know the cochlear implant "installation" wasn't the cause of the tinnitus? Have you seen a video of that process? It looks like installing the electrode in the cochlea would do some permanent damage to the structures in there.
- Feb 6, 2020
- 971
- Tinnitus Since
- 11/2019
- Cause of Tinnitus
- Noise
People who get tinnitus after a CI could also get tinnitus from the surgery itself. It's somewhat invasive (even if it's considered a minimally invasive surgery) it's still surgery so something from the surgical procedure might be the driving factor even if the hearing ends up fine.
Like some people who get the TTTS surgery don't have any tinnitus from it but some do develop it and it may or may not go away.
Agree. In fact, cochlear implant trauma (which is due to post surgical inflammation) is something Hough Ear Institute was looking at as a possible indication for their pill.
Does FX-322 help if your 8th cranial nerve is damaged, which is supposed to be responsible for hyperacusis?
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
What evidence is there to suggest that the 8th cranial nerve is involved in hyperacusis?
The "nerve damage" theorized (not proven as there may not be one cause but rather hearing damage and central gain) to be responsible for loudness hyperacusis is synapse damage or "cochlear synaptopathy." Frequency Therapeutics does not address on its own but does reattach synapses when new hair cells are regrown.
The drugs are in trials for synaptopathy:
OTO-413 (which had good phase 1 results but there is a trial delay, see that thread), Hough Ear Institute Pill (see that thread) and PIPE-505 (see that thread).
I struggle badly with the low frequency roaring. Mine is unbearably loud 24/7. Sounds like a foghorn. The high pitched stuff sucks too.
Even if FX-322 repaired hearing to only an extent and lowered the tinnitus volume by 50%, I would still buy it.
I'm going by what's being reported by neurologists.
The post below your post seems to answer the question:
Isn't it clear that no ENT or audiologist (common folks you find in ENT shops) understand hyperacusis or push forward for more knowledge?The "nerve damage" theorized (not proven as there may not be one cause but rather hearing damage and central gain) to be responsible for loudness hyperacusis is synapse damage or "cochlear synaptopathy." Frequency Therapeutics does not address on its own but does reattach synapses when new hair cells are regrown.
The drugs are in trials for synaptopathy:
Neurologists and companies like the one at hand are the only ones doing any reporting/trials etc... So I don't have evidence for you, @serendipity1996.
They don't know much at all about how hyperacusis works, period. You are asking for evidence. We may both die before there is any.
So look at what professionals are reporting and doing in the meantime. You can call it hope. You won't ever get evidence.
I was deafened in a severe motorcycle accident at 21 years old. I had perfect hearing before the accident. 6 months after the accident happened, I started getting crazy sounds in my head. My ENT doctor said,"your hearing might be trying to come back." Is that crazy or what? I pray every single day something can help me quiet these crazy sounds and hear again. I suffer so much.
I do have a Nucleus 22-Channel Cochlear Implant in one ear. The tinnitus has NEVER gone away.
- May 27, 2020
- 556
- Tinnitus Since
- 2007
- Cause of Tinnitus
- Loud music/headphones/concerts - Hyperacusis from motorbike
This is the wrong thread to start getting into hyperacusis-related stuff, but coming from a fellow sufferer, if you're looking for research/evidence about the pathology behind hyperacusis, I wouldn't bother with neurologists, who are arguably just as much behind the curve as ENTs and audiologists. At the end of the day they're all practitioners, not researchers who are at the forefront of the relevant science. Check out the work being done by Paul Fuchs, Charles Liberman and others and their respective lab teams. The models they have developed for hyperacusis over the last few years are light years ahead of what we had 5 years ago.
Having said all this, I want to address the basic premise of your initial question, which is whether FX-322 will help those of us with hyperacusis. Your 8th cranial nerve argument aside, the bottom line is that we won't know for sure until we start to see people trialing the drug for this purpose. There are anecdotal cases of people receiving cochlea implants and seeing their hyperacusis improve, suggesting then that the issue is, at a very basic level, one of input i.e. if you restore input you may be able to resolve hyperacusis.
However, how this anecdotal evidence matches up with some of the latest hyperacusis models, such as the decrease and increase in the numbers of presynaptic ribbons in type 1 and type II afferents respectively and/or upregulation of purinergic receptors due to ATP leakage of OHCs is not clear. It's possible that the restoration of input, whether biological or mechanical, has some kind of affect on cell signalling and the underlying mechanisms of hyperacusis.
The general consensus here seems to be that FX-322 could well treat loudness hyperacusis, but pain hyperacusis and it's associated symptoms (such as trigeminal neuralgia, which could be more of a middle-ear than inner-ear issue) is anyone's guess. @100Hz has developed some great models that tie together a lot of the latest research and how some of these drugs may, potentially, help us.
Do you have an overview of all the companies with a possible hearing loss cure (hair cells, synapses, ganglions, ...)?The "nerve damage" theorized (not proven as there may not be one cause but rather hearing damage and central gain) to be responsible for loudness hyperacusis is synapse damage or "cochlear synaptopathy." Frequency Therapeutics does not address on its own but does reattach synapses when new hair cells are regrown.
The drugs are in trials for synaptopathy:
OK thanks, I understand better now. It saddens me greatly that neurologists are behind the curve as well. Like you said, they are practitioners...
Where are the FX-322 trials taking place? I'd love to be a guinea pig for it, I just want relief again... A fire alarm while cooking set me back a whole year!
I'm sorry dude. A buddy of mine survived multiple tours in Iraq with the infantry to come home and get severely injured in a motorcycle accident. He went stone deaf in his left ear. He is very lucky he survived honestly. I hope FX-322 will cure you.
To add to this, I know several gentlemen that are in there 50s, 60s, and 70s that unlike myself have purposefully used firearms without hearing protection for lots of various reasons. Some are Vietnam vets, others just were never educated about protecting their ears in their youth. Two of them whom were exposed to gunfire, bombs, grenades, etc have severe hearing loss.
One of them whom has had tinnitus for 40 years just got a cochlear implant. He said the second they switched it on he nearly fainted being the tinnitus vanished in roughly 10 seconds. He was also an ironworker for many years which added to his exposure. He said when he removes the processor to shower, sleep, etc. the tinnitus immediately comes back. He believes the stimulation the implant provides gives his brain what it wants. He said he wishes he would have gotten one 20 years ago.
If I can ever get to a point where I can work a career again I'm going into the medical field. No person should ever have to suffer like this.
Here you go:
IHC: FX-322, OTO-6xx (presumably)
OHC: FX-322, OTO-6xx (presumably), PIPE-505 (minor)
Cochlear Synapses: OTO-413, PIPE-505, Hough Ear Institute Pill *
* Synapses will be regenerated with hair cells when hair cells are regenerated (i.e. neurite outgrowth to the new hair cells will synapse on their own). Synapse drugs are for treating synaptopathy in normal hair cells.
Auditory Neurons: (this is a much less common issue due to things like MS and GBS): Rinri Therapeutics
Also, Akouos has a hair cell regeneration drug in pre-clinical. Since they use AAV therapy they might be tackling the very severe to profound category. They also have gene therapy drugs in the works for three different forms of genetic deafness.
They aren't still recruiting for this trial (unless you are in the severe hearing loss category). They haven't announced Phase 3 locations yet and won't until the end of this year.
More than likely not. If the Phase 2 trials are successful I have no problem standing in front of FDA with picket signs demanding they release the drug early.
Frequency Therapeutics may be able to potentially release FX-322 out in the market after they finish with their Phase 2a clinical trial if they can get Breakthrough Therapy designation.
Who knows. It really depends on the interpretation of "life threatening."
Most doctors will say it needs to be more evaluated and we're all full of crap about our suffering. See the ATA. However maybe they will find the brains to allow it. That is of course if the stuff actually works as intended. The anticipation is killing me.
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