Frequency Therapeutics — Hearing Loss Regeneration

[Lucifer]

They're working on some things too, they just don't seem as promising as bimodal neuromodulation at this time. I posted one of the trials they are working on, I think it was electro acupuncture.

Do you have the link for the electro acupuncture?

 

[ChrisBoyMonkey]

Do you have the link for the electro acupuncture?

https://www.tinnitustalk.com/thread...ts-combined-with-sound-masking-in-rats.35296/

It was only in rats but it looks like it was working, so hopefully they'll be taking the next step with humans soon. I've heard of similar research done before or if not individual accounts of people trying it out.

 

[Earing]

I have fears I'll find FX-322 only works in cases of low frequency hearing loss and not high frequency hearing loss like I have.

But then again they mentioned improved "word scores" in some subjects which implies high frequency improvements...

I also have fears FX-322 will only work on acoustic trauma and not ototoxic destruction (hopefully neomycin doesn't take out the progenitor cells... I'd hope not because some study used aminoglycosides to kill hair cells in birds and they still regenerated their hearing back... ahh I love over extrapolating from the scant research we have).

I was thinking what if it restores some frequencies and not others so the sounds are all weird. Like when you mess with an equalizer on a stereo and the music sounds terrible. Or what if some cells start to regrow and die, and tinnitus becomes 100 times louder. The possibilities are endless.

 

[d'Wooluf]

Sometimes I seriously wonder if anything will come from a direction that we don't expect like China. Wish I could do some research about what they have/have coming.

Something can always come from a direction you don't expect I guess. Here's something from China. A new AAV vector that's tailored specifically to the inner ear. It may bring gene therapy treatments a bit closer.

https://www.nature.com/articles/s41467-019-11687-8

 

[Time4fix]

I was thinking what if it restores some frequencies and not others so the sounds are all weird. Like when you mess with an equalizer on a stereo and the music sounds terrible. Or what if some cells start to regrow and die, and tinnitus becomes 100 times louder. The possibilities are endless.

I think it will affect all frequencies about equally as long as there is proper diffusion of the drug, which I do think they thought about. And I think the cells would stay alive since they have tested it on animals and otherwise probably wouldn't have gone through with the drug.

 

[JohnAdams]

Or what if some cells start to regrow and die, and tinnitus becomes 100 times louder.

That will not happen.

 

[ttzlff2]

That will not happen.

Dear John Adams,

I typically only follow this thread - but I increasingly become annoyed by the tone of your statements. Please keep this thread constructive and positive in tone.

Adding to this, please stop perpetuously complaining about FDAs alleged slowness. I'd rather have a carefully tested drug than one rushed through bureaucracy with irresponsible lacks of knowledge regarding side effects. As far as I understand, you are no (peer-reviewed) expert in the development of that drug, so please don't claim your conjectures as truths and don't attack others who just don't share your understanding of how things should work regarding drug testing. Safeness is a serious concern, please accept that others have defined the rules of the play through an at least partly democratic decision (albeit one which has most certainly been pushed for abbreviation through pharma lobbies)- even if you disagree with them. Everybody here has noticed, by now.

Please note I don't defend FDA and I am not saying its workings and processes are perfect. I just dislike your ranting, confirmation bias and conviction that I personally don't see as rooted in expert knowledge, but as spectator's good judgement. This is fine, but I'd ask you to kindly treat it as such.

Everybody here is hopeful things will work out. However, no confirmed truths for humans yet, irrespective of what animal experiments have shown etc.

 

[Time4fix]

I am quite confident that FX-322 will have a positive effect as long as there is some room for hair cell damage to be repaired (which there often is) and that way make up for the disconnected synapses in the other hair cells. I supposedly have a normal audiogram but I'm still -15 dB so I'd guess that's plenty of room. But of course nothing is proven until they actually open their mouths about the results.

 

[JohnAdams]

I think it will affect all frequencies about equally as long as there is proper diffusion of the drug, which I do think they thought about. And I think the cells would stay alive since they have tested it on animals and otherwise probably wouldn't have gone through with the drug.

The high frequencies are closest to the point of diffusion, the round window membrane, and the cochlea has a circulation.

 

[JohnAdams]

but I increasingly become annoyed by the tone of your statements. Please keep this thread constructive and positive in tone.

Adding to this, please stop perpetuously complaining about FDAs alleged slowness.

I just dislike your ranting

Well, click my avatar, then click this

However, no confirmed truths for humans yet, irrespective of what animal experiments have shown etc.

WRONG
"In the Phase 1/2 study, FX-322 was safe and well tolerated following a single intratympanic injection with no serious adverse events. In addition, improvements in hearing function, including audiometry and word scores, were observed in multiple FX-322 treated patients."
http://www.hearingreview.com/2019/0...itive-results-hearing-restoration-drug-trial/

RIP Harambe

 

[RB2014]

Dear John Adams,

I'd rather have a carefully tested drug than one rushed through bureaucracy with irresponsible lacks of knowledge regarding side effects.

Some of us are on the verge of total deafness. I agree with John on this one. I'd risk it at this point since I feel like I have nothing left to lose.

I'm happy to hear everyone's opinion though including yours and John's.

 

[JaysterT]

Definitely. I remember when I first joined Tinnitus Talk I only knew about Auris Medical but that turned out to be unsuccessful. Now with Regain and Frequency Therapeutics being in Phase 2 and hearing that people who took the drug had improvements in tinnitus, hyperacusis and hearing loss actually gives me hope, and this drug cannot fail since people had improvements.

People had improvements to their tinnitus and hyperacusis with the drug? I thought there was no word yet on whether it was improving these conditions? Then again I might be misinformed.

 

[Chriscom]

Some of us are on the verge of total deafness. I agree with John on this one. I'd risk it at this point since I feel like I have nothing left to lose.

I'm happy to hear everyone's opinion though including yours and John's.

The thing is, we often have more to lose than we realize. So it depends. In the case of our colleagues here who have had truly raging tinnitus for years to the point of torture, a risky procedure may be worth the gamble (that is to say, a risky procedure addressing tinnitus). With near- or total deafness--something I don't have but fear, because my fluctuations have been all over the place--as horrible as that is, there are plenty of things that can go wrong with a drug that hasn't been fully vetted. Out-of-control cell growth is one, unknown side effects that can destroy other systems is two, and destroying structures that are needed to support hearing but may not be fully understood until further testing and research is three.

I know that procedures to restore hearing are on the horizon--and always have been--but now that there's truly solid solutions that, it seems to me, just need to be dragged over the finish line, it's a great time to wait just a bit longer. Easy to say of course.

 

[JohnAdams]

Some of us are on the verge of total deafness. I agree with John on this one. I'd risk it at this point since I feel like I have nothing left to lose.

I'm happy to hear everyone's opinion though including yours and John's.

I am not just talking out of my rear end all the time either. Two chemicals that are being looked at as potential therapies for cochlear nephropathy are BDNF and NT-3. A company called Otonomy is initiating their clinical trials for BDNF this Fall. I already know that BDNF and NT-3 are safe and won't worsen tinnitus or hearing. Don't ask me how I know that just watch and wait for Otonomy to release their trial data for OTO-413. They will report that there were no adverse effects.

You can take that to the bank.

 

[FGG]

I am not just talking out of my rear end all the time either. Two chemicals that are being looked at as potential therapies for cochlear nephropathy are BDNF and NT-3. A company called Otonomy is initiating their clinical trials for BDNF this Fall. I already know that BDNF and NT-3 are safe and won't worsen tinnitus or hearing. Don't ask me how I know that just watch and wait for Otonomy to release their trial data for OTO-413. They will report that there were no adverse effects.

You can take that to the bank.

So Resveratrol significantly increases BDNF levels (as does companionship for those lucky enough to have it), is there any supplement that increases NT-3 in the circulation that you have found?

I take both Grape Seed extract and Japanese Knotweed for the Resveratrol. I think it's helped maybe 5% in 4 months. I'm sure it would be more useful locally administered but it's all I can do for now.

 

[Time4fix]

I am not just talking out of my rear end all the time either. Two chemicals that are being looked at as potential therapies for cochlear nephropathy are BDNF and NT-3. A company called Otonomy is initiating their clinical trials for BDNF this Fall. I already know that BDNF and NT-3 are safe and won't worsen tinnitus or hearing. Don't ask me how I know that just watch and wait for Otonomy to release their trial data for OTO-413. They will report that there were no adverse effects.

You can take that to the bank.

You're everywhere.
I appreciate you trying to push this. Even if it's just trying.

 

[jeff W]

I have fears I'll find FX-322 only works in cases of low frequency hearing loss and not high frequency hearing loss like I have.

But then again they mentioned improved "word scores" in some subjects which implies high frequency improvements...

I also have fears FX-322 will only work on acoustic trauma and not ototoxic destruction (hopefully neomycin doesn't take out the progenitor cells... I'd hope not because some study used aminoglycosides to kill hair cells in birds and they still regenerated their hearing back... ahh I love over extrapolating from the scant research we have).

They will target drug induced vestibulotoxicity/ototoxicity specifically eventually I believe, it presents a perfect model as animal protocols show specific cell damage with huge amount of repeatable models already published. The litigation/claims are absolute enormous for that type of medical malpractice. They are referred to as "dirty drugs" among solicitors in the field.

 

[jeff W]

Some of us are on the verge of total deafness. I agree with John on this one. I'd risk it at this point since I feel like I have nothing left to lose.

I'm happy to hear everyone's opinion though including yours and John's.

Jesse Gelsinger accident was very bad PR.

 

[JohnAdams]

is there any supplement that increases NT-3 in the circulation that you have found?

No, and that's only because I haven't looked yet. I don't want resveratrol because it's like estrogen. Right?

 

[Mathieulh]

I am quite confident that FX-322 will have a positive effect as long as there is some room for hair cell damage to be repaired (which there often is) and that way make up for the disconnected synapses in the other hair cells. I supposedly have a normal audiogram but I'm still -15 dB so I'd guess that's plenty of room. But of course nothing is proven until they actually open their mouths about the results.

Except the disconnected synapses are what's causing your tinnitus, that's why some people have hearing loss and no tinnitus, as they have no cochlear peripheral neuropathy (whereas they have plenty of dead stereocilia).

 

[FGG]

No, and that's only because I haven't looked yet. I don't want resveratrol because it's like estrogen. Right?

It's a phytoestrogen like soy and sweet potato. If you need to avoid those foods, I would probably avoid resveratrol too. To my knowledge, it's really only (generally) a problem in people prone to breast cancer.

 

[JohnAdams]

It's a phytoestrogen like soy and sweet potato. If you need to avoid those foods, I would probably avoid resveratrol too. To my knowledge, it's really only (generally) a problem in people prone to breast cancer.

I've been taking biotin and spirulina at lunch time and curcumin and EGCG with dinner and that seems to be helping a lot and I get huge swaths of no tinnitus and the gains seem to be increasing a little tiny bit every day.

 

[Rb86]

I've been taking biotin and spirulina at lunch time and curcumin and EGCG with dinner and that seems to be helping a lot and I get huge swaths of no tinnitus and the gains seem to be increasing a little tiny bit every day.

John how long have you had tinnitus and what's the cause of your hearing loss?

 

[JohnAdams]

John how long have you had tinnitus and what's the cause of your hearing loss?

Since May 1st 2018. Taking too much aspirin for back pain, and playing electric guitar too loud. I think the aspirin lowered my noise tolerance threshold and the guitar did me in.

 

[Earing]

It's a phytoestrogen like soy and sweet potato. If you need to avoid those foods, I would probably avoid resveratrol too. To my knowledge, it's really only (generally) a problem in people prone to breast cancer.

Sweet potatoes are as well? Huh. Thanks for letting me know.

 

[Daniel Lion]

Except the disconnected synapses are what's causing your tinnitus, that's why some people have hearing loss and no tinnitus, as they have no cochlear peripheral neuropathy (whereas they have plenty of dead stereocilia).

You are certainly more knowledgeable than me... so I may be wrong.

I do recall one of the PhD cats at Stanford's Heller center saying that it was a miracle how when hair cells regenerated they somehow revived synaptic connections as well.

Regardless... perhaps a combination of therapies is needed.

I and a few others here have severe hearing loss. We would love to get some hearing restored regardless of the tinnitus.

Why do some people who use hearing aids find a reduction in their tinnitus? Doesn't that imply the gain theory, that the brain is happier when it has those missing frequencies?

Does that make any sense?

 

[Flamingo1]

I've been taking biotin and spirulina at lunch time and curcumin and EGCG with dinner

Where can we get curcumin and EGCG?

 

[JohnAdams]

Where can we get curcumin and EGCG?

Vitamin stores. Amazon. Grocery stores.

 

[JohnAdams]

2 weeks until their announcement. Will it be a big nothing burger? Will there be any new information? Will the new Star Wars suck? Will Elon Musk reveal his true identity?

 

[Chriscom]

Why do some people who use hearing aids find a reduction in their tinnitus? Doesn't that imply the gain theory, that the brain is happier when it has those missing frequencies?

Does that make any sense?

Yes, it's one of the standard explanations as to why tinnitus often reduces with the use of hearing aids. There's also the matter of simply hearing more of the outside world so some of that is likely masking but who cares