Prof. Thanos Tzounopoulos Receives $2 Million Grant

Then this allows Sound Pharmaceuticals to get the treatment out and also enables them to not necessarily need to put this through clinical trials for other indications.

 

Tinnitus.

 

Have they actually begun the Phase 3 for Meniere's? I couldn't find it on ClinicalTrials.gov. Seems like they're going full steam with the two phase 2 COVID-19 trials which, if on track still, should be done by the end of this year.

 

Is that a fact?

 

Yes, but not everyone reaches receptor tolerance and in some people it takes years to decades.

Also: if you ever withdrawal from taking benzos taper very, very slowly under a (knowledgeable) doctor's care to minimize rebound tinnitus (sometimes severe). This forum is filled with horror stories, unfortunately.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7213946/

https://www.benzo.org.uk/busto.htm

 

How does tinnitus get rebound?

 

I know that they are absolutely going ahead with the COVID-19 relief treatment trials.

However, I am actually not sure about the Meniere's trial. The information I was going off of was what had been provided to me by other users. Even if Sound Pharmaceuticals aren't presently going through the phase 3 trials for Meniere's, it probably won't matter if they get approval for the COVID-19 use. This is because Sound Pharmaceuticals would have the approval for the treatment, then doctors could simply prescribe this treatment off-label for Meniere's.

 

Benzo withdrawal symptoms (and there are a plethora of them) in general are caused by receptor tolerance or lack of receptor stimulation.

Dr. Heather Ashton in the UK who was one of the world's benzo withdrawal experts before she passed away described tinnitus, sometimes very severe as a common symptom of benzo withdrawal.

How it appears to relate to tinnitus is that there are GABA receptors on outer hair cells themselves that help attenuate the glutamate release from sound stimuli. It's easy to imagine impairment of these would impede that attenuation.

But early on that attenuation effect is why it can be very effective.

Not everyone obviously gets benzo withdrawal symptoms but it is a known risk and tinnitus worsening is part of that risk.

 

It was mentioned to me that the tweaked Retigabine was going to be trialled in Australia next.

Can anyone enlighten me as to whether this is true, and if so, when and where please?

 

Well, at least I know what not to use for my tinnitus. Thanks for the info.

 

Hi @DebInAustralia, I've asked Dr. Tzounopoulos about possible trials in Australia and elsewhere, but he couldn't say where it would take place. The mail that I've received from him, below, dates March the 5th, 2020.

________________________________________________________________________________
Sorry to learn of you tinnitus

Hope you feel better soon

We are currently performing preclinical testing

Once this is successfully completed, we will move to clinical trials

Not sure where the clinical trial will take place

RL-81 was designed to treat noise-induced tinnitus in mice.

RL-81 was designed to treat the brain after noise-induced tinnitus;

so it could work even if the auditory nerve is damaged

Thank you for your kind words.

 

I wish we could glean tolerance/withdrawal proclivity genetically like we can do for anti depressant response... just another example of being born too early with this crap.

 

I have wondered if there is a way to do this.

Maybe if the people with known withdrawal problems sent their genome to 23andMe and then uploaded it to Promethease and looked at their GABA receptor genes, it might point to clues in the most obvious genes (of course there are going to be many other genetic cofactors too). You would need a large sample size.

 

I hope this is so, and soon. I've been trying to get into a study for some time since I learned on how to do so, but have been unsuccessful so far. Doesn't help that most of them are U.S based.

 

EARssentials 2020: Dr. Catherine Weisz

This clip explains the mechanisms of how hair cell synapses work. I think it might help you understand Dr. Thanos’ work much better.

 

I think he is talking about RL-81? I feel so down because he seems to say it only works for acute cases of noise induced tinnitus. I hope that’s not the case.

 

No worries. The video is from 2013.

 

Thanks. The notes made by @FGG on his Tinnitus Talk Podcast interview helped a lot. I hope his preclinical trials go well. All of us are waiting and hoping.

 

XEN-496 Phase 3 clinical trial apparently is going to end in December 2022. I don’t know why it’d take so long.

XEN496 (Ezogabine) in Children With KCNQ2 Developmental and Epileptic Encephalopathy (EPIK)

 

December 2022? That is still a very long time.

Is there a DIY chemist who could make the Prof.Tzounopoulos molecule? I'm willing to try anything, my tinnitus devastates my life.

 

The XEN496 is some improved Trobalt from Xenon Pharma. If they are sticking to December 2022 for Phase 3 finishing, then this is actually quite fast as it could be released after that.

It's not Prof. Thanos Tzounopoulos' drug. That is still in pre-clinical stage and we don't know exactly when clinical trials will start.

 

In the grand scheme of things that's not a long time, dude.

 

@Tomas80 I am very sorry to hear of the devastation that this thing of ours has caused you. I encourage you to go over to this thread below and spend 3 minutes to e-mail the American Tinnitus Association and kindly ask that they focus their new found wealth on permanent funding for tinnitus research and not other actives.

If I am not mistaken, it was seed grant money from the ATA that helped get Prof. Tzounopoulos going with this current prospective pill. Everything you need can be found on the thread. Little actions we take today can compound greatly over time. All the best to you!

Call to Action: Contact the ATA Right Now — 3 Minutes to Make a Difference

 

That’s actually an interesting question and possibly something that could be found in the dark web.

 

Is there any hint of a prospective timeline for clinical trials to start?

 

I think in May 2020 he said in the Tinnitus Talk Podcast that the preclinical trial would take roughly 1.5 years. So maybe clinical trials would start in 2022?

Anyway this is far off.

We can probably first test hearing regeneration drugs and the improved Trobalt from Xenon Pharma.

 

Yeah my money's on that we'll have hearing regenerative drugs long before RL-81 sees Phase 2. I hope RL-81 works well too. With tinnitus we could all use as many treatments and solutions as possible.

 

Do we have any reason to believe XEN496 will be effective for tinnitus, or is it purely speculation based upon the efficacy of Trobalt?

 

It’s literally the same thing as Trobalt.

 

I was blessed to not even be aware that tinnitus was a thing when Trobalt came out and then was pulled, so I'm not very familiar with it, though I've pursued some old posts. It was actually effective for a lot of people (most?)... aside from turning blue and dying and such, right?

If so, should I be getting excited that there will be another potential treatment in 2022? I count FX-322 and Dr. Susan Shore as possibly maybe sort of being in 2022. If so, 2022 could be the big year for us blessed individuals.