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Frequency are not using notch therapy - they are doing Progenitor Cell Activation. Completely different things.

We also have anecdotes from people on this site that the old Retigabine (Trobalt) helped their noxacusis.

Exactly - I think Retigabine could definitely provide symptomatic relief but at the end of the day it's not a curative drug or repairing the underlying structural damage that has led people to develop tinnitus. It will also probably come with side effects even though it's been made safer. It's...

Right but earplugs aren't really "sound deprivation." Most musician's plugs and even most foam plugs are only reducing and taking the edge off - hardly like you're in a sound isolation booth.

This is not the case and has been known for a decade - Robert Jackler from the Stanford Initiative to cure hearing loss mentioned that regrown hair cells come with intact synaptic connections that link up with it and called it a 'miracle'. Also, Frequency's own studies have shown that...

It's always good to hear recovery stories but head's up everyone - DXM is not classed as a psychedelic drug, it is in fact a dissociative (e.g., Ketamine is a dissociative but not a psychedelic). This should be corrected or made clear.

Yikes.

I mean, I don't think it's just some lone tiny minority of people on this thread who believe in this theory, as you seem to think. This is hardly a fringe opinion either. The Hearing Health Foundation last year made a post about how treatment of noise-induced tinnitus will require developing...

Most of the discussion has been on Xenon Pharmaceuticals, which has developed a reformulated version of Retigabine with improved potency, safety, and selectivity. They already have two drug candidates in Phase 2b and Phase 3 of clinical trials.

I think it's worth noting that last year the Hearing Health Foundation, one of the most prominent organisations in this space, published a post stating that curing noise-induced tinnitus "will first require curing hearing loss"...

No, my first experience of hyperacusis was late 2016 which went away after a few months. I then had a major setback/relapse at the end of 2019 and it's taken the last 18 months to recover from it - I had 24/7 burning ear pain for 3 months but lingering facial neuralgia and sensitivity for a long...

It was related to my acoustic trauma and has lessened over time as my hyperacusis has improved. I don't have it any more.

There are closed captions.

Got my 1st Moderna vaccine this morning - only side effect thus far has been a sore and stiff arm. No effect on tinnitus or hyperacusis.

You did mean this as a joke, right?

Interesting discussion - for what it's worth, I have been on Concerta (methylphenidate) for 3 years but it has had no effect on my tinnitus...

The synapses that are involved in synaptopathy are the Type 1s which connect onto the inner hair cells. Nothing to do with the outer hair cells. In fact, it was recently shown that the number of Type 2 ribbon synapses actually *increases* in response to acoustic trauma, in contrast to Type 1s...

Every single time...

Rinri Therapeutics in the UK is using a stem-cell based approach... but they are in pre-clinical development. As an aside, Frequency Therapeutics, for example, has highlighted how challenging traditional stem-cell approaches are because you have to deliver and integrate cells into the proper...

The webcasts are always available to listen to after the event if you go to their website.

I have wondered this too although it's important to point out that there are a lot of unanswered questions - see this talk Megan Wood gave from 32:00 onwards where she addresses these. E.g it is not known whether this effect persists or not and how things like inflammation or cell death could...

https://www.pipelinetherapeutics.com/news/Society-for-Neuroscience-49th-Annual-Meeting-Chicago.pdf It says right here that PIPE-505 leads to regeneration of inner hair cell ribbon synapses aka Type 1s. When people refer to synaptopathy, it refers to the these connections. These are the...

Just to clarify, PIPE-505 would regenerate the Type 1 synapses which connect to the inner hair cells. The OHCs synapse onto Type 2s, which are not involved in synaptopathy.

Ah, I should have clarified this in my post but I do not have personal experience of the benefits system and am very fortunate to be living with my family who support me. From what I have read though, the disability system is failing people horribly. This needs to change. It's a real shame...

I totally agree with you - I definitely think society fetishizes productivity and your self-worth is tied to your achievements. I think it's not just an American thing and is typical of late-stage capitalism lol. I very recently had a situation in my own life where I had to grapple with this...

Really good points and I just want to add that we should all be wary of "inspiration porn" and survivorship bias. Yeah, there are some people in awful circumstances who have managed to achieve a lot despite it e.g the iron-lung man. And that's great. But there are so many others who suffer...

To be fair, I feel it was balanced out by a fair number of people calling in saying they want regenerative treatments.

Incidentally, I have to say I was struck by how many participants reported persistent fatigue as a result of their hearing loss - to the point that they would have to take naps or consult doctors, as one woman put it. I think this just goes to show that you can't just brute force your way to...

Omg when the presenter said they had a comment from someone who said "I have tried psychological help and sound therapy although these treatments have been of limited use" - that was ME. I submitted the comment to the presenters a few weeks ago so was not expecting that haha. That was just after...

Did anyone else watch this and catch the guy on the panel who has tinnitus and hyperacusis from a gunshot when he was 18? He had normal hearing beforehand, and that instant of noise was basically life-changing for him which feels so relatable for many of us. He also has hyperacusis-induced...

David Lucchino will be presenting at 2 upcoming investor conferences - the Jefferies Conference on 2 June and the Goldman Sachs Conference on 10 June. Frequency Therapeutics to Present at Upcoming Jefferies and Goldman Sachs Healthcare Investor Conferences

The event will be starting in an hour! There will be live captions available too.

Certain antibiotics are documented as ototoxic - particularly the aminoglycoside class (typically ending in 'mycin') which tend to be the worst offenders. Azithromycin, from the macrolide class, has also led to cochlear damage in rare cases, and the fluoroquinolones (e.g Ciprofloxacin and...

FX-322 is focused mostly on hair cell regeneration - it only regenerates synapses if the corresponding hair cell is damaged. However, given that synapses are the most vulnerable to damage, I think it would be very unusual for someone to have hair cell loss but no synaptopathy. Certainly, when it...

Just to add, The Inner Ear Disorders Therapeutics Summit, will be featuring presentations from all the major players - including David Lucchino from Frequency Therapeutics, Otonomy, Akouos, Decibel Therapeutics, and more. Rinri Therapeutics will also be presenting on their stem cell approach to...

Thanks - I had an interview at the office last year (pre-COVID-19 lol) and it's not some open-plan office or anything and is a pretty small firm so it could be worse.

I don't think so unless you're working in a call centre or something? Maybe it's a cultural thing - I don't think it's that common in the UK. The job is working at a wealth management firm, dealing with writing reports and other administrative duties although I will receive more information on...

It's not as bad as it was but I still get facial pain (like low-level throbbing/sunburn) from stuff like phone calls etc. I actually have just been informed I may have a job offer - working in an admin role in an office and I am just unsure whether I can hack it or not. I don't really get...

Please report back on how you get on! Will be interesting to hear.

New paper out co-authored by Liberman investigating the histopathology of both AHRL and NIHL. Is anybody here able to access the full paper? Primary Neural Degeneration in Noise-Exposed Human Cochleas: Correlations with Outer Hair Cell Loss and Word-Discrimination Scores

Age-related hearing loss is thought to be due in part to degeneration of the stria vascularis.

Professor David Baguley who focuses on tinnitus and hyperacusis certainly believes there's reason to be optimistic about hearing therapies in the pipeline. I think we need to be realistic about FX-322 but we are still progressing.

Well, Liberman has shown that the synapses are the most vulnerable to acoustic trauma, moreso than hair cells. I suspect many of us with a "normal" audiogram have significant synapse loss even if our hair cell loss is limited.

This is a really great initiative backed by Tinnitus Talk as well as all of the big guns - Frequency Therapeutics, Otonomy, Decibel Therapeutics etc. I submitted comments about hyperacusis and tinnitus and how current treatment options are failing us and the urgency of biomedical solutions...

Otonomy is not the only company working on synapse regeneration - Pipeline Therapeutics also has a drug in clinical trials targeting this. Otonomy also has a hair cell drug in development - I assume it will be a few years at least until they advance to clinical but they are working on both...

Fascinating work being done by Michael Levin and his lab on bioelectricity and its potential for regenerative medicine. The New Yorker: Persuading the Body to Regenerate Its Limbs Welcome to the Levin lab: investigating information storage and processing in biological systems

I started out with 15 mg but have mostly been on 30 mg for the past 3 years.

I don't think Mirtazapine is generally considered ototoxic - if it helps, I have been on it for 4+ years with no effect whatsoever on my tinnitus or hyperacusis.

Oops I totally misread that! Glad that you have been referred to a specialist and I hope you get some answers and some relief for your lung problems. It must be so tough but all we can do is persevere. X

There is increasing evidence that many cases of interstitial cystitis may actually be a chronic/embedded urinary tract infection (UTI). The standard testing (dipstick and culture) has been shown to be pretty outdated and insensitive, missing the vast majority of chronic infections. Sadly, this...

This is so accurate. Even though I am mostly out of pain and grateful for it, I am still susceptible to flare-ups which can trigger my symptoms. It's honestly so limiting and mentally exhausting. It really ruins your ability to be carefree - even simple things like going out for a walk become...

Type 2 synapses are different from Type 1 synapses - they are not destroyed or damaged by noise - in fact they have been shown to remain intact in damaged regions of the cochlea and may even increase in number following acoustic trauma (whereas Type 1s decrease in number).

Rinri Therapeutics has raised £10 million to support the development of their stem-cell therapy to restore hearing. Rinri Therapeutics Raises £10 million from Existing Investors and UK Future Fund to Advance its Novel Stem Cell Therapy to Restore Hearing Loss

Yeah I imagine this is why mental fatigue and exhaustion are so commonly cited with hearing loss as your brain is having to work exceptionally hard to figure out what people are saying. It's not like you can just put your mind to it and succeed.

We all want this to come out ASAP but to be honest I think it's wishful thinking at this point to think they'll be able to skip a Phase 2 repeat.