Prof. Thanos Tzounopoulos Receives $2 Million Grant

He clearly realizes the limitations of Trobalt because he said making it more selective will make it more effective, not just safer.

 

Then let's hope this drug is an improvement over Trobalt. Do you know if it also improved pain hyperacusis for some?

 

Ey everyone, does anybody know if RL-81 also work for people with NIHL? After having read some comments on Tinnitus Talk, it gives me the impression that the medicine seems to be more suitable for people who had other causes (if we look at Trobalt in relation to ototoxic medicines, ear infection, e.g.)

 

If I heard Dr. Thanos right, they used noise to induce tinnitus in the rats but I'm not confident I heard that correctly. Anyone else?

 

From his research and lab tests, this molecule is 15x more potent than Trobalt.

 

Interesting. Sad to see how long ago these discussions happened though. I developed hyperacusis last week after a year of tinnitus and I’m ready for it to stop now I wonder if the first trials happening in Australia will affect his ability to apply for fast track status? Is this the furthest along pain hyperacusis treatment besides nav 1.7 inhibitors in preclinical trials?

 

15 times more potent sounds promising but what is the measure here? Probably should have been asked in the Q&A.

When the researchers compared the three drugs head-to-head in lab tests, they found RL-81 was 15 times more potent than retigabine and three times more potent than SF0034. Because of its specificity, RL-81 also should have fewer side effects.

 

I wonder if the reason why the trials will be performed in Australia is to get the drug released faster. Maybe Australia doesn’t have strict clinical trials criteria like the US FDA.

 

I can only assume they meant "influence on the target ion channel" so maybe a measure of generated potential. Agree would have been a great question.

 

We have only 10 years left to live in suffering hoping that the clinical trials will work out.

 

While Trobalt effectiveness was somewhat questionable, for my low frequency drone it worked wonders for hissing, burning pain, ear sensitivity...

I would take it and a bit later my head and ears felt “cleared” if that makes sense!

It was, literally, as if someone flicked the switch and you felt normal again.

 

Hopefully the current clinical trials of Frequency Therapeutics FX-322 and Audion Therapeutics will help us solve our issues in the mean time since these drugs are most likely going to be released first.

 

I did not realise we had a member from Tinnitus Talk that tried Trobalt saying that their burning pain and ear sensitivity improved.

How long did you take it for? After you stopped, were the effects permanent?

 

For horrible reactive hissing and burning it provided a quick relief, similar to taking something for headache. When I say relief I don’t mean all my ear issues were completely gone but what I had was good enough for me to feel semi normal.

Relief wasn’t permanent. Being in Australia, Trobalt for me was very hard to get, also the price was very high. I only had few weeks supply.

I can’t say if longer use would result in permanent improvement, but in all honesty, I would be happy to have something to take when s..t hits the fan, even if relief is temporary.

 

Dear people,

I just got an email from Dr. Thanopoulos about where the clinical study might take place, if it is also for people with NIHL (you're absolutely right @FGG ) and for those who may have auditory nerve damage (@HootOwl ).
_______________________________________________________________________________
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.

 

Thanks for the update. I do believe this drug works for pain hyperacusis since @valeri stated that she had improved sensitivity and less burning ear pain while she was on Trobalt.

Not too sure if it would be something I would have to take continuously for life or until it goes away. I wouldn’t mind taking it for life if it relieves me from the pain but hope it doesn’t cause me to die earlier than expected.

 

Hopefully the first drugs that will be coming out such as FX-322 and Audion Therapeutics solve our issues with hyperacusis and tinnitus.

 

This is very encouraging to hear that there might be something that gives us relief from pain hyperacusis.

Prof. Thanos seems to be very kind. At least he is responding to email enquiries. From Audion I did not receive any answer even when their official trial results publication date (30/4/2020) passed.

 

I so wish I had few pills to take now to cut this damn shhhhhhh...

Personally I always believed that only a pill would be able to help us to calm down our brains.

I never trusted sound therapy or anything that pumps more noise into your head. I’m not saying it doesn’t work but between the two I would always opt for pill.

Trobalt definitely did something for tinnitus so I firmly believe that The Greek Thor will beat the damn thing!

 

That's so encouraging to hear! Did you also have facial symptoms e.g facial tingling/numbness? Did it help alleviate those?

 

I remember putting cold water bottles on my face right in front of my ears.
I honestly can’t tell you if it was numbness or tingling but it just didn’t feel right, it was something in between plus burning.

For me face symptoms are always related to ear burning and hyperacusis so it all temporarily improved while on Trobalt.

I really have high hopes for this new version of it.

 

Excellent that Trobalt brought relief - yeah I don't know how to properly describe the symptoms either. I'm excited about this drug's potential. I also emailed Xenon Pharma a few days ago, who have a number of products in clinical trials to ask whether their drugs could potentially be applicable to auditory disorders such as tinnitus and hyperacusis. Will see if I get a response.

 

Hi @FGG, I completely overlooked your notes! It's very insightful. So basically, does it mean that the pill might have the capacity to work as a permanent ''reset button'' for people with cochlear damage? If so, Tzounopoulos may have something in the works that is as equally world altering as the FX-322 pill

 

I believe that's the idea.

 

That sounds like great news @FGG. I really hope that it becomes a real game changer. I just donated to the cause. Money well spent, I hope!

 

I just discovered that Folding@Home, a distributed computing poject that simulates how proteins work, is also studying how of potasium ion channels function.

No mention of tinnitus, however.

https://stats.foldingathome.org/project?p=16804
https://foldingathome.org/

 

http://investor.xenon-pharma.com/ne...ceuticals-host-conference-call-and-webcast-22

Xenon Pharmaceuticals is having a conference call today. While they could just be giving a business update, they may discuss the performance of various drug candidates currently in or completing phase 1 or 2 testing.

 

Interesting, is anyone able to catch this? Incidentally, I sent them an email a few weeks ago enquiring about their product pipeline and whether they are looking into auditory disorders at all but haven't (yet?) received a reply. I'd be very interested to hear from them as they already have several products in clinical trials so they're further along.

 

Hi Valeri, what dosage did you need to take to feel the effect?

 

http://investor.xenon-pharma.com/ne...euticals-reports-first-quarter-2020-financial

Xenon's press release. No mention of tinnitus. They say they are exploring uses for other neurological disorders. XEN1101, the most likely to be relevant to us, is expected to complete an ongoing phase 2b trial in the first half of 2021.

They also say their partner has had positive animal trials for a nav 1.7 blocker. They'll start human testing next year.