Frequency Therapeutics — Hearing Loss Regeneration

[Lucifer]

Is it not April or did they postpone it till May?

They said results will be posted on the 30th of April but that's why I said May.

 

[all to gain]

And lol I think I'll need a double dose of FX-322 and talking therapy - I'll probably still have a lingering fear of noise haunting me forever lmao.
Interesting speculations about the cost - I wonder how long it would take to become available under a system like the NHS in the UK. Although I would probably just fly out and pay for it anyway asap.

Honestly, I can't see the NHS rushing to get this to people. But, boy, do I hope I'm wrong.

 

[Pink Noise]

And lol I think I'll need a double dose of FX-322 and talking therapy - I'll probably still have a lingering fear of noise haunting me forever lmao.
Interesting speculations about the cost - I wonder how long it would take to become available under a system like the NHS in the UK. Although I would probably just fly out and pay for it anyway asap.

I'm going to fly out and pay - you only have one life. No point in suffering whilst waiting for the NHS drug procurement.

 

[Ten Letter Word]

I think that you will still have to be very, very careful. Remember that the underlying cause/predisposition to maladaptive plasticity in your brain that led to tinnitus in the first place isn't being fixed. Only the cochlear input. Whatever has gone wrong with regards to our gating mechanisms is still in place even after new hair cells/synapses are formed.

You bring up a good point about the maladaptive plasticity! The resilience and physical recovery of the inner ear is one thing (one BIG thing), but there are still plenty of other systems up the chain that could be left highly sensitive.

But it's my understanding that the whole "in the brain" question is not 100% understood yet.

Obviously we can detect abnormalities in the brain function of individuals with tinnitus. But, from my understating, whether those brain changes are an issue unto their own, or simply the brain's active and continued response to damages in the structures of the ear is still unknown. Questions remain. Would the maladaptive patterns dissipate along with regeneration of the damaged structures? Maybe there would be a slight delay in a return to standard neural function? Or, as you suggested, perhaps the maladaptive plasticity would remain, regardless of improvements to the structures of the ear.

As I understand it, we don't know exactly how all those systems play together, especially because we've never been able to roll the clock back on any of them. But with future therapies like FX-322 and its ilk, it seems we might finally have that chance. Hopefully they'll offer us a new level of insight into how all of the systems of the ear and brain interact. To me, that's almost as exciting as their therapeutic potentials!

It's funny how, often times in science, you have to find the answer before you can understand exactly how the question works .

 

[Danad]

There are many articles supporting the notion that restoration of hearing in the offending frequencies will reverse the maladaptive plasticity causing tinnitus. Tinnitus caused by temporary hearing loss nearly always resolves.

https://www.hindawi.com/journals/criot/2012/210707/

 

[mrbrightside614]

The fact that people pop in a hearing aid and, poof—it's gone, indicate to me two things:

1) increased hearing inputs IN AND OF THEMSELVES (not in respect to correcting actual tinnitus) can be just as valuable reversing the actual tinnitus-associated deficiencies.

2) maladaptive plasticity's threat is over-emphasized. I do foresee a gradient of recovery rather than absolute, but the timeline wouldn't be equitable to the amount of time you'd had tinnitus.

 

[all to gain]

The fact that people pop in a hearing aid and, poof—it's gone, indicate to me two things:

1) increased hearing inputs IN AND OF THEMSELVES (not in respect to correcting actual tinnitus) can be just as valuable reversing the actual tinnitus-associated deficiencies.

2) maladaptive plasticity's threat is over-emphasized. I do foresee a gradient of recovery rather than absolute, but the timeline wouldn't be equitable to the amount of time you'd had tinnitus.

I so hope you are right. It will be a bummer if we all get better hearing but no change in tinnitus.

Being pessimistic, is it possible, in any way, that our tinnitus could even get worse from this drug? Maybe the actual injection itself could worsen things?

 

[HootOwl]

My bad, I think I explained myself extremely poorly. Which is pretty much my norm >.>

I didn't mean to imply that maladaptive plasticity is not reversible. As @mrbrightside614 has mentioned there is a mountain of evidence (both academic and clinical) that restoring input will reverse hyperactivity and reduce/eliminate tinnitus.

I don't worry about this at all.

What remains is the question of how much of a predisposition to maladaptive plasticity will remain once treatment is rendered. There's virtually no research on it so it's anyones guess, but I'm erring on the side of caution and assuming that restoring cochlear input does not necessarily mean the predisposition is eliminated entirely.

Us forum folks have brains that unfortunately adapt in maladaptive ways much more so than others. For example, I know someone with mild tinnitus who still went to rock shows and did all kinds of crazy loud stuff throughout their life. Their hearing deteriorated in their 60s but their tinnitus remained extremely mild, despite an aggressive lack of cochlear input. This stands in stark contrast to myself who got a new tinnitus tone because someone shouted for a split second across the hall once in a hospital - the kicker is that I was a good 30 feet away. I have minimal cochlear damage and virtually no problems hearing people or my surroundings.

Their predisposition to maladaptive plasticity and mine are obviously very different. Both lack of cochlear input, but 2 very different outcomes. Even though I hope hearing regeneration will reduce or eliminate my noise induced tinnitus, I fail to see how it will eliminate this predisposition entirely and therefore I will always need to be as careful as possible.

And to be frank, I foresee some of us (most likely me because my brain seems to love hyperactivity, damn you brain) accumulating new tinnitus sounds in the future and needing continued treatment if this is the case.

 

[HootOwl]

Being pessimistic, is it possible, in any way, that our tinnitus could even get worse from this drug? Maybe the actual injection itself could worsen things?

@FGG has mentioned this before, but they said it's best to find an ENT specializing in Meniere's. They give these injections regularly and are generally very, very familiar with the process.

I think that would reduce the already quite small amount of risk associated with the injection itself.

I already found my guy lol. My audiologist said he would get patients back after this ENT gave injections for SSHL and not see a single scar. He said he was always like "did you even get the injection?"

 

[all to gain]

@FGG has mentioned this before, but they said it's best to find an ENT specializing in Meniere's. They give these injections regularly and are generally very, very familiar with the process.

I think that would reduce the already quite small amount of risk associated with the injection itself.

I already found my guy lol. My audiologist said he would get patients back after this ENT gave injections for SSHL and not see a single scar. He said he was always like "did you even get the injection?"

I want your guy too LOL. As I will be coming from abroad, I wouldn't know where to start looking for someone.

 

[Pink Noise]

@FGG has mentioned this before, but they said it's best to find an ENT specializing in Meniere's. They give these injections regularly and are generally very, very familiar with the process.

I think that would reduce the already quite small amount of risk associated with the injection itself.

I already found my guy lol. My audiologist said he would get patients back after this ENT gave injections for SSHL and not see a single scar. He said he was always like "did you even get the injection?"

I wonder how quickly ENT doctors will get access to the drug and the training for that. I guess that would add further delay. I wonder if there is a way to find ENTs who are willing to take advantage of the fact that this is the first treatment for hair cell damage. Establishing themselves for a large customer base before others.

 

[HootOwl]

I wonder how quickly ENT doctors will get access to the drug and the training for that. I guess that would add further delay. I wonder if there is a way to find ENTs who are willing to take advantage of the fact that this is the first treatment for hair cell damage. Establishing themselves for a large customer base before others.

That's a good question about access, and none of us really know. I imagine it will be up to each individual clinic whether or not to stock the compound, and like you said some will be more bullish than others in order to capitalize on returns.

Training is not an issue. It's a standard injection - nothing else is needed. Convincing an ENT to do this off-label for tinnitus might be a larger hurdle, but hopefully the experimental arm will provide enough positive data to assuage any fears.

 

[HootOwl]

I want your guy too LOL. As I will be coming from abroad, I wouldn't know where to start looking for someone.

Haha, well if all goes well I will disclose the name of him and the clinic.

However, if you're abroad keep an eye out on news involving Japan. There's a chance (somewhat small) they might get access to the drug before the United States based off Frequency's licensing arrangement with Astellas and Japan's current regenerative medicine laws.

 

[FGG]

That's a good question about access, and none of us really know. I imagine it will be up to each individual clinic whether or not to stock the compound, and like you said some will be more bullish than others in order to capitalize on returns.

Training is not an issue. It's a standard injection - nothing else is needed. Convincing an ENT to do this off-label for tinnitus might be a larger hurdle, but hopefully the experimental arm will provide enough positive data to assuage any fears.

Many if not most ENTs are not at all trained in IT injections. All Otologists are, however (ENT subspecialists). A "Meniere's specialist" ENT would be your best non-otologist bet as they do these very routinely.

 

[FGG]

Truthfully, I can see "hearing regeneration only" clinics popping up quickly in response to demand the same way LASIK eye centers did.

 

[mrbrightside614]

Being pessimistic, is it possible, in any way, that our tinnitus could even get worse from this drug? Maybe the actual injection itself could worsen things?

To quote @HootOwl "fuck, I'll eat crow if FX-322 makes anybody's tinnitus worse." I agree 100%—this is not even on my radar of concerns.

 

[Lucifer]

To quote @HootOwl "fuck, I'll eat crow if FX-322 makes anybody's tinnitus worse." I agree 100%—this is not even on my radar of concerns.

I'm going to hold you down on that if it does lol.

 

[HootOwl]

So this is what it's like to have old tweets come back to haunt you o.o

 

[Tweedleman]

Truthfully, I can see "hearing regeneration only" clinics popping up quickly in response to demand the same way LASIK eye centers did.

This is my thinking as well, and I actually hope it will be the case. Here in Canada the wait to see an ENT can be up to a year and you need a referral in the first place. If you were to go through healthcare then I imagine our doctors will look at who "needs" the drug based on a certain standard of audiometric thresholds (and hopefully tinnitus suffering) and those patients MAY qualify for it to be covered under our healthcare. Although I don't believe hearing aids are covered at all so perhaps this wont even be the case. I'm guessing the majority of us will have to pay, which I'm fine with doing as long as I can walk in and make an appointment without jumping through hoops and waiting.

I can't wait to see a whole menu of treatments. I'll take 2 shots of FX-322, PIPE-515, OTO-414, and a jar of Hough Pills to go, please.

 

[HootOwl]

Truthfully though, I think if we all do our due diligence and find a qualified otologist or a Meniere's ENT we should be fine.

I'm a severe case so it's not like I have a choice :/

 

[Jack V]

This is my thinking as well, and I actually hope it will be the case. Here in Canada the wait to see an ENT can be up to a year and you need a referral in the first place. If you were to go through healthcare then I imagine our doctors will look at who "needs" the drug based on a certain standard of audiometric thresholds (and hopefully tinnitus suffering) and those patients MAY qualify for it to be covered under our healthcare. Although I don't believe hearing aids are covered at all so perhaps this wont even be the case. I'm guessing the majority of us will have to pay, which I'm fine with doing as long as I can walk in and make an appointment without jumping through hoops and waiting.

I can't wait to see a whole menu of treatments. I'll take 2 shots of FX-322, PIPE-515, OTO-414, and a jar of Hough Pills to go, please.

Just curious - are you saying that if you agree to pay out of pocket, you could see an ENT tomorrow rather than wait a year, or you'd still have to wait even if you were paying?

 

[Jack V]

Many if not most ENTs are not at all trained in IT injections. All Otologists are, however (ENT subspecialists). A "Meniere's specialist" ENT would be your best non-otologist bet as they do these very routinely.

When I first heard about injections I was apprehensive.

And then when I actually got them, it was like ehh, no big deal.

Dizzy for 30 seconds when they pump in the fluid, and then you just chill on your side for half an hour, easy peasy.

 

[F-u-T]

Here in Canada the wait to see an ENT can be up to a year and you need a referral in the first place.

Wow. That is crazy. Good ole Universal Health Care. I can see an ENT as soon as one week here in AZ without a referral. I had an IT injection of steroids within a week of my acoustic trauma.

 

[Ten Letter Word]

What remains is the question of how much of a predisposition to maladaptive plasticity will remain once treatment is rendered.

Ah, gotcha! Yes, I agree that individual differences in predisposition, like the anecdotes you shared, might mean that some are more sensitive to further maladaptive plasticity.

What remains is the question of how much of a predisposition to maladaptive plasticity will remain once treatment is rendered. There's virtually no research on it so it's anyones guess, but I'm erring on the side of caution and assuming that restoring cochlear input does not necessarily mean the predisposition is eliminated entirely.

I would hope with the intervention of drugs like FX-322, those more sensitive to maladaptive plasticity would trend towards greater resilience against future maladaptive plasticity. Maybe rock concerts are off the list, but hopefully things like shouts and everyday noises wouldn't cause further problems. I wouldn't be first in line to test those limits on myself either though, haha .

Like you said, lots of questions will still remain even if FX-322 proves its efficacy. But I look forward to following the future research, and all the things we'll learn. Even after, fingers crossed, we've all gotten our shots of goo .

 

[Tweedleman]

Just curious - are you saying that if you agree to pay out of pocket, you could see an ENT tomorrow rather than wait a year, or you'd still have to wait even if you were paying?

I'm saying if I agreed to pay out of pocket it would have to be through a private regeneration clinic in the fashion of Lasik.

 

[mrbrightside614]

Wow. That is crazy. Good ole Universal Health Care. I can see an ENT as soon as one week here in AZ without a referral. I had an IT injection of steroids within a week of my acoustic trauma.

To be fair, this is not the norm in the U.S.

Glad you have competent practitioners, seriously, that's a ridiculous blessing many have not been afforded.

How did your hearing loss/tinnitus respond?

 

[Orions Pain]

Wow. That is crazy. Good ole Universal Health Care. I can see an ENT as soon as one week here in AZ without a referral. I had an IT injection of steroids within a week of my acoustic trauma.

I was able to see an ENT within 5 days - in CA (would have been faster if the weekend wasn't there). He brushed me off completely and told me to come back in a month or two if it got worse literally chuckled and said a week is nothing.

 

[F-u-T]

How did your hearing loss/tinnitus respond?

I had a 15 dB improvement at 8 kHz from audiogram pre IT to one week post IT. Tinnitus improved as well during that timeframe.

 

[F-u-T]

I was able to see an ENT within 5 days - in CA (would have been faster if the weekend wasn't there). He brushed me off completely and told me to come back in a month or two if it got worse literally chuckled and said a week is nothing.

Don't feel bad. That is the response people with tinnitus get from most ENTs.

 

[Lucifer]

If FX-322 were to come out would you expect it to be free in the public health system?