Frequency Therapeutics — Hearing Loss Regeneration

[Tweedleman]

My audiologist said I have a normal audiogram. If I don't have hearing loss then would this help me?

This will probably help you.

Lots of us have "normal audiograms." You probably have damage over 8 kHz in the upper high frequencies that usually aren't tested. You would need an extended audiogram to reveal that. Either way, the audiogram doesn't tell the whole story (look into hidden hearing loss), so don't let the audiologists and ENTs wave it in front of you as being the defininitve picture. Audiograms generally only reveal OHC loss. They don't tell us anything about our IHCs or synapses. And keep in mind they are only testing your ability to hear a few tones out of a range of 20 kHz. Hearing care is in the stone ages, our practitioners are lightyears behind the researchers and the overly simplistic antiquated metrics they use to determine something as complex as hearing loss are stupidly misleading.

We really need a sticky about this.

 

[FGG]

My audiologist said I have a normal audiogram. If I don't have hearing loss then would this help me?

A normal audiogram up to 8000Hz only tells you that you don't have widespread outer hair cell damage up to 8000Hz. You could still have loss in certain untested "notches", outer hair cell damage above 8000Hz, inner hair cell damage or synapse damage.

In other words, audiograms are extremely limited and unfortunately can't tell you if this drug will benefit you unless you happen to have audiogram changes.

An abnormal audiogram shows outer hair cell damage and therefore will show that this drug could help but a normal audiogram cannot rule in/out whether this drug or a synaptopathy drug could help.

It would be nice if the diagnostics kept pace with the upcoming treatments but they haven't, unfortunately.

 

[Jack V]

Not going to lie it is like my #1 reason for wanting it gone.

The hangover thing is super weird! Maybe you're focusing so much on the headache that you forget about the tinnitus?

I will actually be microdosing magic mushrooms for a couple of weeks soon.

They've been shown to introduce heightened levels of neuroplasticity, and for some people their tinnitus is gone or significantly lessened by the time they stop using the mushrooms.

I looked into that and found very little information floating around, but what I did find seemed promising.

I would be VERY interested in your personal experiences.

Please report back, start a thread, PM me, all of the above!

Thanks and good luck!

 

[Diesel]

Jumping back to the March 26 presentation, for those getting anxious in recent comments:

I'd like to point out where they have become more 'relaxed' in sharing data in their presentations. For example, in the most recent March presentations compared to the January presentation. On page 21, two additional patients (5 &6) were added; both improvements in word counts, although not technically significant.

I'd also like to point to Page 24. Which in my opinion, is the MOST OPTIMISTIC for those of us that would like to see FX-322 eventually improve our tinnitus symptoms. All of us should print this page out and frame it on the wall to look at every day during quarantine.

Here's why:

1. It stands to reason that AT LEAST 4/15 patients had improvements above 8kHz, however they just weren't tested since the audiograms didn't test above 8kHz. As shown in the cochlea diagram, the drug is absorbed at the highest ranges, and works its way down.

2. It is likely that at least 1 of the 15 saw some type of mild improvement below 8kHz, it just may not have been significant enough to put in the presentation.

3. Example: Since the test dose was low, and a single dose for that matter, it may have been 1 person seeing a 4dB improvement at 6kHz. Therefore, nixed from the presentation as maybe not significant enough, and inviting scrutiny. Hence my example above about Page 21.

The way I see it, they're walking a very careful line to express the bon-a-fide facts without embellishing or generating speculation. They want to get this drug into the market with the best facts and information in the hands of investors, doctors, patients, reviewers, etc. In my opinion, this is all a good thing. Companies focused on releasing facts avoid lawsuits, SEC probes, government intervention, delays in testing, ethical issues, cancelled contracts, and ultimately market rejection.

 

[PhoenixAcademy]

Thanks for the info FGG.

 

[GlennS]

The updated slide is a bad thing as it stands now

I would still take it. Masking from everyday ambient noises becomes progressively harder at higher frequencies. That's my current hell, tones above 10K, flyback transformer territory.

 

[Sevv]

My audiologist said I have a normal audiogram. If I don't have hearing loss then would this help me?

Most audiograms only test up up 8000 Hz, while damage causing tinnitus is usually in the 8000-16000 Hz range. So "fine" is often "probably not fine".
Not to forget synaptopathy that doesnt show at all on audiograms.

 

[all to gain]

So, this thread has been going for 257 pages now and I don't really have the time to go through it all, so I just want to ask:

With what we currently know, does it seem that FX-322 is worth it?

Asking because they're doing trials in my city and I could be eligible to take part.

A part of me wants to do it. Even if I don't get better, I'd end up being a small part of medical history which is pretty cool, and I could get some money for participating.

But another part of me feels that it's not worth the risk. The examinations include tympanometries, which many people on this site have had bad luck with. This assuming that I get the drug and not the placebo.

Should I risk it?

If I had the chance, I would probably risk it. However, maybe our circumstances are very different, i.e. my tinnitus is severe and at times catastrophic... I would do pretty much anything to get some relief as long as it had a decent chance of working with no or few known side effects!

There are many questions you should ask yourself. Make a list and see how they stack up, for and against. For example:

1. Can I live with my current level of tinnitus?
2. What if the tympanometry makes my tinnitus worse AND I don't get the drug, i.e. only the placebo?
3. What if I don't take this chance and my tinnitus gets worse, to a level I can't live with, and I end up kicking myself for a lost opportunity? Maybe the drug won't hit the market for another 10 years.
4. What if there are really severe side effects to this drug, regardless of whether it works or not, that have not been discovered or disclosed yet?
5. And the list goes on...

Only you can make the choice. Good luck with whatever you decide, and please report back (when you are allowed to) if you get on the trial and get the real thing.

 

[ThomasRobert]

Unless I misunderstood what you were saying, Strekin's drug is an anti-oxidant that prevents inflammation from causing permanent damage. It's not a coating that modifies brain perception of hair cells.

Yes, correct. Let's wait for the Phase 3 results (to be published shortly...)

 

[ThomasRobert]

Is it the one that's out in the market now or the one that's in the study? I contacted them and got an answer saying that one device is out. Which one do you mean?

It's a drug. I am not aware of any device from them? What's the name of the device?

 

[Momme]

It's a drug. I am not aware of any device from them? What's the name of the device?

What's the name of the drug and do they have a website? Is it for people with subjective tinnitus?

Then I misunderstood you, I was talking about Tinniwell.

 

[AtlasFainted]

I looked into that and found very little information floating around, but what I did find seemed promising.

I would be VERY interested in your personal experiences.

Please report back, start a thread, PM me, all of the above!

Thanks and good luck!

Will do! It is hard to find good info about it, probably mainly due to its legal status.

In my own research, I came to about the same conclusion you did concerning tinnitus. There are also other benefits that come with microdosing, such as increased productivity, creativity, and a general sense of well being.

So worst-case scenario it won't help my tinnitus but will help out in other areas! I'll be sure to follow up.

 

[Rb86]

Can anyone speculate on this for me...

I've read multiple success stories where noise induced tinnitus fades away to nothing after a couple years, up to 5 years and in some cases longer.

We know damage is permanent. If the tinnitus can disappear magically, why would hearing restoration cure it?

I understand they speculate the brain will have new input, or regained input, but if Tinnitus can disappear, it would mean hearing levels don't necessarily directly correlate.

 

[AtlasFainted]

Can anyone speculate on this for me...

I've read multiple success stories where noise induced tinnitus fades away to nothing after a couple years, up to 5 years and in some cases longer.

We know damage is permanent. If the tinnitus can disappear magically, why would hearing restoration cure it?

I understand they speculate the brain will have new input, or regained input, but if Tinnitus can disappear, it would mean hearing levels don't necessarily directly correlate.

I think people's tinnitus resolving by itself would probably be chalked up to neuroplasticity. The brain is always changing and can learn to filter out certain things over time.

Some people have profound hearing loss and no tinnitus. Others have what seems to be perfect hearing, but severe tinnitus...

It would be very hard to argue that the majority of tinnitus cases aren't in some way hearing loss related.

It stands to reason that if hearing loss is remedied in people who have hearing loss related tinnitus, then their tinnitus would stop.

Think about amputees and phantom limb syndrome - they often still feel pain in the lost limb. However with mirror therapy, when their brain thinks it is seeing the lost limb restored again, the pain goes away.

Restoring hearing loss for tinnitus is the same principle.

Also not all amputees get phantom limb syndrome; just like not all with hearing loss get tinnitus.

 

[Tweedleman]

Can anyone speculate on this for me...

I've read multiple success stories where noise induced tinnitus fades away to nothing after a couple years, up to 5 years and in some cases longer.

We know damage is permanent. If the tinnitus can disappear magically, why would hearing restoration cure it?

I understand they speculate the brain will have new input, or regained input, but if Tinnitus can disappear, it would mean hearing levels don't necessarily directly correlate.

How bad was their damage, did they sustain measurable hearing loss? I think it's possible that in those cases the damage to structures wasn't severe and permanent, so the tinnitus faded once inflamation resolved.

I remember @FGG saying she read something about certain individuals having stronger thalamic gating, to explain why some people incur hearing loss without getting tinnitus. Perhaps that could be a factor.

 

[FGG]

How bad was their damage, did they sustain measurable hearing loss? I think it's possible that in those cases the damage to structures wasn't severe and permanent, so the tinnitus faded once inflamation resolved.

I remember @FGG saying she read something about certain individuals having stronger thalamic gating, to explain why some people incur hearing loss without getting tinnitus. Perhaps that could be a factor.

There is a thalamic component for sure (likely genetic) but I think with severe enough (especially sudden) damage, almost anyone would get tinnitus imo.

 

[Rb86]

How bad was their damage, did they sustain measurable hearing loss? I think it's possible that in those cases the damage to structures wasn't severe and permanent, so the tinnitus faded once inflamation resolved.

I remember @FGG saying she read something about certain individuals having stronger thalamic gating, to explain why some people incur hearing loss without getting tinnitus. Perhaps that could be a factor.

Many did not have hearing loss. I did however make a thread in the past about those who had measured hearing loss pre and post tinnitus fading. Someone mentioned they knew some whose tinnitus faded away despite measured hearing loss. Tinnitus and hearing loss are not mutually exclusive as we all know.

And it would seem unlikely to me that inflammation would go away years after the fact.

 

[Rb86]

I think people's tinnitus resolving by itself would probably be chalked up to neuroplasticity. The brain is always changing and can learn to filter out certain things over time.

Some people have profound hearing loss and no tinnitus. Others have what seems to be perfect hearing, but severe tinnitus...

It would be very hard to argue that the majority of tinnitus cases aren't in some way hearing loss related.

It stands to reason that if hearing loss is remedied in people who have hearing loss related tinnitus, then their tinnitus would stop.

Think about amputees and phantom limb syndrome - they often still feel pain in the lost limb. However with mirror therapy, when their brain thinks it is seeing the lost limb restored again, the pain goes away.

Restoring hearing loss for tinnitus is the same principle.

Also not all amputees get phantom limb syndrome; just like not all with hearing loss get tinnitus.

The neuroplasticity idea is interesting but I'm not sure. My tinnitus fluctuates quite a bit. Overall downward trend over 10 months, although incredibly slow, and the past week and a half I've had my low end booming sound, which I had terribly at the start, then some in the middle and some now, but, completely gone for weeks or months in between. My 24/7 is a tv static or hiss. Started as a 16,000 Hz tone and that has become more of a tv "on" / electric sound.

I wish my brain would just learn to leave it alone but it just fluctuates all the time. And noise does make it worse so I protect whenever using power tools or engines.

 

[d'Wooluf]

Will do! It is hard to find good info about it, probably mainly due to its legal status.

You've searched for psilocybin? It's attracting mainstream interest as a possible treatment for depression.

 

[AtlasFainted]

You've searched for psilocybin? It's attracting mainstream interest as a possible treatment for depression.

Correct; psilocybin. I'm a big believer as far as the positive impacts it can have on one's psyche as a whole.

As far as tinnitus goes though I haven't seen any actual studies. I'm basing my approach based mainly on anecdotal, 2nd hand evidence.

 

[AtlasFainted]

The neuroplasticity idea is interesting but I'm not sure. My tinnitus fluctuates quite a bit. Overall downward trend over 10 months, although incredibly slow, and the past week and a half I've had my low end booming sound, which I had terribly at the start, then some in the middle and some now, but, completely gone for weeks or months in between. My 24/7 is a tv static or hiss. Started as a 16,000 Hz tone and that has become more of a tv "on" / electric sound.

I wish my brain would just learn to leave it alone but it just fluctuates all the time. And noise does make it worse so I protect whenever using power tools or engines.

My opinion is still that if your symptoms are due to hearing damage then improving the hearing damage should improve the symptoms.

Also if your tinnitus is improving, even very slowly, I think @Bill Bauer would say that is a very good sign, and he has done a ton of research on this.

I don't think tinnitus changing or fluctuating disproves neuroplasticity, rather I would guess it is probably way harder for the brain to filter out (or for you to get used to) something that is constantly changing.

My tinnitus isn't constant either and shifts from ear to ear, but it always stays in the ultra high frequency range.

When I'm not listening to music, I usually play "cricket sounds" on repeat through my amazon Alexa at my house, which masks it almost perfectly.

 

[MrCrybaby]

There are a lot of posts on this page asking about how we know treating hearing loss could impact tinnitus. I think we need to look at it from a different angle.

Hearing loss, tinnitus, and hyperacusis are all symptoms. In this community they are usually symptoms of cochlear degeneration brought about by drugs, infection, or noise. This drug does not treat the abstract concept of "hearing loss" but rather targets a VERY specific site of cochlear damage: the hair cells. So the questions are really "will cochlear regeneration treat cochlear degeneration?" (Obviously yes) and further "will the brain adjust to the regenerated cochlea?" (Possibly, because neuroplasticity is a thing).

Not all persons will experience all symptoms the same (tinnitus or hyperacusis can occur with quite normal hearing levels, and impactful hearing loss without tinnitus or hyperacusis) but the underlying damage is present in all cases (be it nerve endings, hair cells, or other steps of the auditory pathway) and that is what regenerative drugs will treat.

 

[Jaysterk]

There are a lot of posts on this page asking about how we know treating hearing loss could impact tinnitus. I think we need to look at it from a different angle.

Hearing loss, tinnitus, and hyperacusis are all symptoms. In this community they are usually symptoms of cochlear degeneration brought about by drugs, infection, or noise. This drug does not treat the abstract concept of "hearing loss" but rather targets a VERY specific site of cochlear damage: the hair cells. So the questions are really "will cochlear regeneration treat cochlear degeneration?" (Obviously yes) and further "will the brain adjust to the regenerated cochlea?" (Possibly, because neuroplasticity is a thing).

Not all persons will experience all symptoms the same (tinnitus or hyperacusis can occur with quite normal hearing levels, and impactful hearing loss without tinnitus or hyperacusis) but the underlying damage is present in all cases (be it nerve endings, hair cells, or other steps of the auditory pathway) and that is what regenerative drugs will treat.

This couldn't have been explained any better. All these symptoms have a place of origin. It doesn't matter if there are 1001 different symptoms. If you fix the spot where the symptoms originate, you have a winner.

 

[AtlasFainted]

There are a lot of posts on this page asking about how we know treating hearing loss could impact tinnitus. I think we need to look at it from a different angle.

Hearing loss, tinnitus, and hyperacusis are all symptoms. In this community they are usually symptoms of cochlear degeneration brought about by drugs, infection, or noise. This drug does not treat the abstract concept of "hearing loss" but rather targets a VERY specific site of cochlear damage: the hair cells. So the questions are really "will cochlear regeneration treat cochlear degeneration?" (Obviously yes) and further "will the brain adjust to the regenerated cochlea?" (Possibly, because neuroplasticity is a thing).

Not all persons will experience all symptoms the same (tinnitus or hyperacusis can occur with quite normal hearing levels, and impactful hearing loss without tinnitus or hyperacusis) but the underlying damage is present in all cases (be it nerve endings, hair cells, or other steps of the auditory pathway) and that is what regenerative drugs will treat.

I agree with this and think it is great, but also think it is important to mention that a small percentage of tinnitus cases might not have damage in the auditory pathway per se (unless you are including the brain itself as part of the auditory pathway).

Tinnitus as a side effect of concussions/brain damage comes to mind.

 

[Am92]

Does FX-322 claim to repair auditory nerve fibres or just the hair cells?

 

[Jaysterk]

Does FX-322 claim to repair auditory nerve fibres or just the hair cells?

From what I remember, it repairs hair cells and synapses of said hair cells. Someone will probably post a way better answer later today!

 

[MrCrybaby]

Does FX-322 claim to repair auditory nerve fibres or just the hair cells?

Newly generated hair cells will attach to the auditory nerve, but preexisting hair cells will not reattach. Drugs by other companies address the nerve endings that attach to the auditory nerve (Hough pill, OTO-413, PIPE-505), they have their own threads.

 

[AtlasFainted]

Does FX-322 claim to repair auditory nerve fibres or just the hair cells?

I think the general take on this is that FX-322 doesn't repair hair cells or nerve fibers, it grows new ones where they've been lost completely, along with their respective synapse.

There are a couple of other drugs in clinical trials that repair synapse damage in hair cells that are still intact.

Pretty sure most people on this thread think FX-322 will have the most impact for regenerating hearing, but the other synapse drugs should help too.

 

[FGG]

Does FX-322 claim to repair auditory nerve fibres or just the hair cells?

FX-322 repairs hair cells and will re-synapse to the ganglions of the nerve once repaired. If you have synapse damage without hair cell damage or auditory nerve damage (pretty uncommon and due to certain systemic immune conditions) you will need different drugs.

OTO-413, Hough Pill and Pipeline Therapeutics for synapse.

Rinri is working on auditory nerve damage (things like Guillian Barre or genetic conditions can affect the nerve).

 

[Danad]

Does FX-322 claim to repair auditory nerve fibres or just the hair cells?

Will McLean, Ph.D. addresses this in an excerpt attached below from a presentation on YouTube: