Frequency Therapeutics — Hearing Loss Regeneration

[Contrast]

I applied and was denied via email due to my hearing loss being above 10kz I have mild hearing loss from a rifle shot, with tinnitus. I do association higher frequency loss with mental illness than other tones. We suffer silently but after this cure we will comeback stronger than ever

I have a notch at 10k and distortion starting at 6k in my right ear.

i'm desperate to get into a trial

 

[d'Wooluf]

Ive been on an emotional downward spiral for 3 months and now that i believe it will happen in the next few years i dont even care and my T has dropped significantly. Weird disease this one.

I think I linked you to a page on mindfulness training that said pretty much the same thing as the post below yours. It's not "all in the mind" but the mind has a big role to play.

 

[JohnAdams]

I have a notch at 10k and distortion starting at 6k in my right ear.

i'm desperate to get into a trial

yeah, but you may get placebo.

 

[Ozwel]

There's one thing I'm concerned at this point: if people already have tried FX-322, even very few at that time, where are they?

People joining the study at this point are the most desperate ones. If I were one of them and this drug had cured me, I think I'd have shared that achivement on the internet, to a community like this board or a social network (and then would have spread quick thanks to people like us). Maybe they signed a Non Disclosure Agreement?

 

[d'Wooluf]

It's being handled by an ENT practice. They would have hundreds of people on their books who would qualify. They may recruit participants by ringing around, or waiting for likely prospects to just walk through the door. Are they going to go looking for those most desperate? Just the opposite I think. If you're running a clinical trial do you really want a bunch of people who are so invested in its success? It's a trial. It may not be successful. You'd be managing emotional meltdowns on a daily basis.

Apart from that, it's just started. No-one's going to be reporting positive results even if they wanted to and were allowed to. Last thing: They may grow hair cells, but they also have to maintain them. Imagine the angst if someone reported back here that they'd regained their hearing and had to report again a few months later that they'd lost it again.

Seriously, it'a a trial. It's not treatment.

 

[Enclave]

Jeff Karp stated in a podcast last year that they expect the treatment to have long lasting effects if it works in the first place.

We also don't know exactly how long it takes for the inner ear cell regeneration to occur. It could take weeks or months.

 

[Soren]

Just wanted to share this little tidbit.

I emailed Mr. Jeff Karp sometime ago and asked this "But I would like to ask you if your method will also repair/regenerate the auditory nerve/conections from nerve to haircell?

Mr Jeff Karp -
Thank you for the note - we have some evidence to suggest the answer to that question is yes - but only time will tell as we push things forward

with warm regards,
Jeff"

 

[JohnAdams]

There's one thing I'm concerned at this point: if people already have tried FX-322, even very few at that time, where are they?

People joining the study at this point are the most desperate ones. If I were one of them and this drug had cured me, I think I'd have shared that achivement on the internet, to a community like this board or a social network (and then would have spread quick thanks to people like us). Maybe they signed a Non Disclosure Agreement?

Yeah I would think NDA's would have to be involved. Im dying to know though.

 

[JohnAdams]

I just called Amamo ENT and spoke with a woman and took a message from me for Jeff Holland asking whether the participants had to sign NDA's.

 

[JohnAdams]

Does anybody know what measures will be studied in phase 2 with fx 322?

 

[d'Wooluf]

How would anyone know apart from the people who are running the study? Look up the clinical trials for the Regain Hearing Project and I think this would be fairly similar. From memory, return visits every couple of weeks. Full audiometry at every visit. Tests for balance. Questionnaires about general health and/or anything out of the ordinary.

They're trying to treat hearing loss, so pure-tone audiometry and speech recognition scores. Is there anything else they could measure?

 

[IvanRus]

So scary, if Frequency Therapeutics does not work with ear regeneration, or regeneration will help only individuals with a certain type of cell damage.

I do not want to think about it, I believe.

Otherwise, it's like suicide

 

[Soren]

So scary, if Frequency Therapeutics does not work with ear regeneration, or regeneration will help only individuals with a certain type of cell damage.

I do not want to think about it, I believe.

Otherwise, it's like suicide

It has been shows to work in mice. The mice dead haircells was restored(I dont know how many %). FX is not the only Company that is working on restoring hearing through regen. So haircells have been shows to regrow and as Mr. Karp have said that there is evidence to show that it may also repair the nerve connection to the hair cell. So to me it Sounds like the progenitor cell is incoded to restored the work of fully working haircell and all what that intells. Just like it works in birds. It takes a few weeks for haircells to regrow in chicks.

 

[Deathtotinni]

as long as i can have a healthy cochlea again i dont care who wins the hearing loss race i just want help

I think fx322 will be safer than gene therapy. I'm going to go to the clinical trail. I need another Audiogram. I had one maybe 7 months ago and need another one to get in. My uncle who has unilateral hearing loss is likely going to try to go with me but I think he's 64 or 65 not sure if they will take him. I also had what I think is vestibular injury without apparent balance issues. I feel unbalanced but it's not bad enough to be messureable. I'm also 29 years old and used to workout a lot so maybe that's helping with my balance? I do notice my Bain fog gets better and better the more I walk and move around. I suffered a skull fracture which damaged my ear and then sound trauma made it worse then suffered a mild concussive blow to the head. I'm hoping if I fix my hearing loss/vestibular system I'll improve in a lot of areas. Sometimes I feel as though trying to focus on balance creates mental fog. But I'm going just need another Audiogram.

 

[Manny]

I'm going to go to the clinical trail.

@Deathtotinni cool! Have you been accepted for the trial by its administrators? [Pending your additional audiogram]

 

[JohnAdams]

So scary, if Frequency Therapeutics does not work with ear regeneration, or regeneration will help only individuals with a certain type of cell damage.

I do not want to think about it, I believe.

Otherwise, it's like suicide

I think its going to work perfectly.

 

[Terrel]

I think its going to work perfectly.

I think this treatment is going to fix other ear disorders as well

 

[Contrast]

I think this treatment is going to fix other ear disorders as well

i want to know the effect it will have on tinnitus and hyperacusis as well as hearing loss that has mostly to do with synaptic damage.

 

[Terrel]

i want to know the effect it will have on tinnitus and hyperacusis as well as hearing loss that has mostly to do with synaptic damage.

Hyperacusis is a form of hearing loss right?

 

[Contrast]

Hyperacusis is a form of hearing loss right?

it's hypothesized to be caused by damaged outer hair cells triggering pain receptors in the cochlea.
It's only an educated guess that this is the cause of hyperacusis and virtually every case of hyperacusis has to do with hearign damage, but it is confirmed that the type II nerve cells act as pain receptors. Scientist don't know if repairing outer hair cells will solve the problem or if that is the problem to begin with.
https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

 

[lymebite]

Hyperacusis is a form of hearing loss right?

Hyperacuis is a hearing disorder but hearing loss is not necessarily a related symptom - in fact, hyperacusis patients typically test "normal" in terms of a "standard" audiogram up to 8,000 hertz.

From the Hyperacusis Research website:

Hyperacusis is a condition that causes a person to be unable to tolerate everyday noise levels without discomfort or pain. This condition is frequently initiated by a loud noise exposure but can also be induced by certain drugs. Hyperacusis may occur with certain conditions such as Bell's Palsy, Autism, or Williams Syndrome.

In a comprehensive review of research on Hyperacusis, Rich Tyler and co-authors noted the wide range of definitions for hyperacusis. They identified four sub-types of hyperacusis: loudness, annoyance, fear, and pain.

Loudness hyperacusis is when moderately intense sounds are judged to be very loud compared with what a person with normal hearing would perceive.

Annoyance hyperacusis is a negative emotional reaction to sounds.

Fear hyperacusis is an aversive response to sounds that results in an anticipatory response and avoidance behavior.

Pain hyperacusis is when a person experiences pain at much lower sound levels than listeners with normal hearing (typically around 120 dB SPL).

For many patients, several of these sub-types may coexist. Hyperacusis Research's work is focused on this last type as we are dedicated to researching what we call "noise-induced pain."

Hyperacusis can be diagnosed by an Audiologist or an Otolaryngologist (ear, nose, and throat doctor). There are no specific corrective surgical or medical treatments for hyperacusis. However, sound therapy enables some patients to be able to gradually tolerate more sounds by listening to a form of white noise. See the American Academy of Otolaryngology's hyperacusis patient page for additional diagnosis and treatment details. Hyperacusis Research is committed to finding a cure for patients whose condition has not significantly improved by current treatment options.

https://hyperacusisresearch.org/what-is-hyperacusis/

 

[Soren]

I emailed one researcher by the name Anoveros. He has writen about type II nerouns and there link with hyperacusis.

I asked him this:
- If we repaired the OHC`s like by regenerateing them. Would that be a way to stop the fibers from reacting with pain to normale sound levels?

The problem with pain hyperacusis is that it is not triggered by damage to OHCs. Type IIs respond to this damage normally, and this is appropriate. Pain hyperacusis sufferers feel the pain to non-harmful sound levels. The hypothesis is that the normal pain system of the type II afferents has been sensitized, so that they now become active in response to the vibrations caused by normal sounds. This is akin to what happens in some cases of neuropathic pain, when damaged pain fibers (elsewhere in the body) are active in response to light touch, so that this becomes painful (this is called allodynia). So, the solution would probably not be to replace the OHCs, but to silence the type II afferent neurons.

Sorry for going of topic.

 

[Contrast]

Hyperacusis is a form of hearing loss right?

if you don't know what hyperacusis is, it's the preception of noises being painfully loud or just painful in general.

I wouldn't really call it hearing loss, but it's a sign of cochlear damage and probably more unknown factors

Hyperacuis is a hearing disorder but hearing loss is not necessarily a related symptom - in fact, hyperacusis patients typically test "normal" in terms of a "standard" audiogram up to 8,000 hertz.

From the Hyperacusis Research website:

Hyperacusis is a condition that causes a person to be unable to tolerate everyday noise levels without discomfort or pain. This condition is frequently initiated by a loud noise exposure but can also be induced by certain drugs. Hyperacusis may occur with certain conditions such as Bell's Palsy, Autism, or Williams Syndrome.

In a comprehensive review of research on Hyperacusis, Rich Tyler and co-authors noted the wide range of definitions for hyperacusis. They identified four sub-types of hyperacusis: loudness, annoyance, fear, and pain.

Loudness hyperacusis is when moderately intense sounds are judged to be very loud compared with what a person with normal hearing would perceive.

Annoyance hyperacusis is a negative emotional reaction to sounds.

Fear hyperacusis is an aversive response to sounds that results in an anticipatory response and avoidance behavior.

Pain hyperacusis is when a person experiences pain at much lower sound levels than listeners with normal hearing (typically around 120 dB SPL).

For many patients, several of these sub-types may coexist. Hyperacusis Research's work is focused on this last type as we are dedicated to researching what we call "noise-induced pain."

Hyperacusis can be diagnosed by an Audiologist or an Otolaryngologist (ear, nose, and throat doctor). There are no specific corrective surgical or medical treatments for hyperacusis. However, sound therapy enables some patients to be able to gradually tolerate more sounds by listening to a form of white noise. See the American Academy of Otolaryngology's hyperacusis patient page for additional diagnosis and treatment details. Hyperacusis Research is committed to finding a cure for patients whose condition has not significantly improved by current treatment options.

https://hyperacusisresearch.org/what-is-hyperacusis/

The standard audiogram 250- 8000hz isn't accurate
https://www.ncbi.nlm.nih.gov/pubmed/28087419

Loudness and Painful hyperacusis are actual problems relating to cochlear damage.
They may be seperate entirely or may sure a relationship I don't know?

The others are psychological and can be brought on by panic from actual hyperacusis.
misophonia.
https://www.webmd.com/mental-health/what-is-misophonia

 

[Contrast]

I emailed one researcher by the name Anoveros. He has writen about type II nerouns and there link with hyperacusis.

I asked him this:
- If we repaired the OHC`s like by regenerateing them. Would that be a way to stop the fibers from reacting with pain to normale sound levels?

The problem with pain hyperacusis is that it is not triggered by damage to OHCs. Type IIs respond to this damage normally, and this is appropriate. Pain hyperacusis sufferers feel the pain to non-harmful sound levels. The hypothesis is that the normal pain system of the type II afferents has been sensitized, so that they now become active in response to the vibrations caused by normal sounds. This is akin to what happens in some cases of neuropathic pain, when damaged pain fibers (elsewhere in the body) are active in response to light touch, so that this becomes painful (this is called allodynia). So, the solution would probably not be to replace the OHCs, but to silence the type II afferent neurons.

Sorry for going of topic.

thank you for this information

 

[Deathtotinni]

@Deathtotinni cool! Have you been accepted for the trial by its administrators? [Pending your additional audiogram]

I have not but it sounds as though I will be. Have to fly out there and screen I assume. Other than my hearing and possible vestibular problems I'm healthy man. I have completely normal blood work and heart function. Blood pressure is normal too

 

[Manny]

I have not but it sounds as though I will be. Have to fly out there and screen I assume. Other than my hearing and possible vestibular problems I'm healthy mean I have completely normal blood work and heart function. Blood pressure is normal too

Well, best of luck to you and please do keep us posted!

 

[Deathtotinni]

yeah, but you may get placebo.

Do you know what % of the willing lab rats will get the study drug and which ones will not? I would think it's either 50/50 or 2/3 that get the drug. Sad thing is those who didn't get the drug may never know. I'm praying I get the drug. I'm fully invested in going. My T was horrible but I've since grown used to it. The hearing is what's troubling me along with possible damage to my vestibular system. Don't really know because I don't feel dizzy or fall but I do have every other possible symptom. I've read that younger people tend not to have balance problems from vestibular damage and only the cognitive issues.

 

[Deathtotinni]

Well, best of luck to you and please do keep us posted!

I will but if they make me sign a NDA I'll have to drop very subtle hints that it is indeed doing its job. Fully ready get on with my life and go back to being young again.

 

[lymebite]

The standard audiogram 250- 8000hz isn't accurate
https://www.ncbi.nlm.nih.gov/pubmed/28087419

Yes, sadly almost no audiologists test above 8,000 hertz. Even here on Tinnitus Talk very few people have been tested up to 20,000 hertz.

If testing up to 20,000 hertz instead of 8,000 hertz were standard practice, there would be a vastly more relevant dataset for medical researchers to evaluate in correlating tinnitus (and hyperacusis) with hearing loss.

Even here on Tinnitus Talk, where people are very concerned about hearing issues, over and over again people report their audiologist told them they have "perfect hearing" but of course that is only up to 8,000 hertz so it is very deficient in terms of testing the full spectrum of potential hearing loss.

 

[Contrast]

Yes, sadly almost no audiologists test above 8,000 hertz. Even here on Tinnitus Talk very few people have been tested up to 20,000 hertz.

If testing up to 20,000 hertz instead of 8,000 hertz were standard practice, there would be a vastly more relevant dataset for medical researchers to evaluate in correlating tinnitus (and hyperacusis) with hearing loss.

Even here on Tinnitus Talk, where people are very concerned about hearing issues, over and over again people report their audiologist told them they have "perfect hearing" but of course that is only up to 8,000 hertz so it is very deficient in terms of testing the full spectrum of potential hearing loss.

not just pure tonal noise above 20,000hz, test noise deciphering in complex background setting.