Prof. Thanos Tzounopoulos Receives $2 Million Grant

[UKBloke]

Have you tried to send him another mail as a reminder? I did the same thing and after a while you get a reply back. I have the idea that he is bombarded with a lot of emails and may overlook some things here and there. Good question btw.

I'll drop him another email and if he responds post the summation in here.

 

[dan]

200-300mg as a single dose would do the trick.

Do you remember when you first started Trobalt--did you initially try a lower dose than 200mg to see any effects?
Or did you start with 200mg as your first dosage?

Reason I'm asking was when I took 50mg (half the pill) I felt absolutely no change in tinnitus. (Unfortunately at 50mg I already had a life threatening side effect).

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.

How would you describe this low drone, is it like a morse code like Tuuu Tu Tuuu Tuu Tu Tuuu...? And how easily is it masked?

 

[dan]

I sent an email to Dr. Thanos Tzounopoulos asking about safety (specifically heart rhythm abnormalities) and potency of RL-81... I also thanked him on behalf of our tinnitus forum and tinnitus sufferers worldwide, for his great work and effort.

Here is his response:

Sorry to learn of your tinnitus.

I don't have much to add to what I said in my podcast. We are doing all the necessary tests to make sure RL-81 is not toxic. All your RL81-related concerns, and many more, will be tested. So far, so good.

Yes, 15x more potent, much more selective and much more metabolically stable than retigabine.

Thank you for your kind and encouraging words.

Hope you feel better

Best, Thanos

 

[UKBloke]

I'll drop him another email and if he responds post the summation in here.

I received a very nice reply from Thanos regarding my question about whether or not the treatment aims to address acute or chronic tinnitus. Basically, the criteria of the trial will answer the question. In other words, if time since tinnitus onset is >3 months and <1 year then that's who the study is aiming for.

Trial criteria is yet to be decided but the process is quite simple I suppose. For reference:

Susan Shore's latest trial criteria was tinnitus onset >3 months (I think), and preferably < 1 year.

Lenire, on the other hand, trialed subjects with onset < 5 years.

For obvious reasons, I would be most happy if all future trial criteria (inc @Will Sedley) did not put an upper limit on time since tinnitus onset. We'll see.

 

[valeri]

Do you remember when you first started Trobalt--did you initially try a lower dose than 200mg to see any effects?
Or did you start with 200mg as your first dosage?

Reason I'm asking was when I took 50mg (half the pill) I felt absolutely no change in tinnitus. (Unfortunately at 50mg I already had a life threatening side effect).

How would you describe this low drone, is it like a morse code like Tuuu Tu Tuuu Tuu Tu Tuuu...? And how easily is it masked?

Initially I only managed to get one box of 100mg tablets.

I don't remember all the details but I didn't see much improvement on low doses, it wasn't until I got more boxes of 200mg that I saw improvement on higher doses.
I think the highest I got was 3x200mg.

Then I slowly tapered down because I didn't have much left.

But when burning pain and hyperacusis kicked in I just randomly took 200mg or 300mg and it helped a lot.

Low frequency is best compared to a truck parked in front of your house with engine on.
It basically is drone, engine noise!
It's masked depending on loudness, usually I wouldn't hear it if there's a helicopter flying over, or if I'm driving.
Louder low frequency would mask it.
When it started I used fish tank pump but that no longer helps.

Bigger problem now I have with this new high pitch sound, it's a new devil!

 

[Joly]

Hello! Will Thanos' treatment be reserved for people with tinnitus less than a year old?

 

[UKBloke]

Hello! Will Thanos' treatment be reserved for people with tinnitus less than a year old?

This question was addressed two posts above your original one.

It seems to me that the various medical researchers are a little reticent when it comes to making any kind of statement regarding acute vs. chronic tinnitus. They're perhaps even more reticent when it comes to answering questions like, will your treatment work for someone who has had tinnitus for x number of years?

By telling us these questions are essentially answered by the, time since tinnitus onset, trial criteria I think Thanos has made a very good and useful point. The flip-side of course is, that its is not very encouraging when (as in Susan Shore's ongoing trial criteria for example) the max time since tinnitus onset is preferably < 1 year. If her product ever reaches the market this is going to create something of a paradox for a great number of sufferers in my opinion. Let's hope Thanos can be more generous.

 

[dan26]

Hello! Will Thanos' treatment be reserved for people with tinnitus less than a year old?

If it is, then I'm not going to benefit at all. Almost 40 years of tinnitus... horrible to have it and cope.

 

[Joly]

@dan26

No one on Tinnitus Talk would benefit from it if it was only for people who have had tinnitus for less than a year. The drug will be in development for another year, then there are the clinical trial testing phases. It would be available in 7 years. If this is the case, we can abandon this solution.

40 years with tinnitus. You are really strong. It's been almost a year since I got tinnitus and hyperacusis, and I cannot imagine living like this.

 

[Autumnly]

Will Thanos' treatment be reserved for people with tinnitus less than a year old?

Unfortunately, that's a question we can't answer for sure yet.

Tzounopoulos: "I think our drug would work in cases where there is hyperactivity of the central nervous system. Also, what I believe about our drug, and I cannot predict yet in which category it is going to work, but we are working on it and I will talk to you about that later." source

 

[xyz]

@dan26

No one on Tinnitus Talk would benefit from it if it was only for people who have had tinnitus for less than a year. The drug will be in development for another year, then there are the clinical trial testing phases. It would be available in 7 years. If this is the case, we can abandon this solution.

40 years with tinnitus. You are really strong. It's been almost a year since I got tinnitus and hyperacusis, and I cannot imagine living like this.

We have already seen cases here on Tinnitus Talk for which Trobalt worked and they already had had tinnitus for years. Why shouldn't this drug from Dr. Thanos then not work for chronic cases if it's even more potent than Trobalt?

 

[ASilverLight]

Wonder if they're ever going to make it a 'normal' part of our diagnostic plan to look at the activity of the brain. My visual snow has gotten a little worse as has my sleep, and I wonder what that implies.

 

[Born To Slay]

Why is no one talking about XEN-496? If people want a retigabine reformulation, isn't that basically just one for kids? And if so, couldn't be prescribed off label at larger doses for adults if it need be?

https://www.xenon-pharma.com/product-pipeline/xen496-for-epilepsy/

 

[serendipity1996]

Why is no one talking about XEN-496? If people want a retigabine reformulation, isn't that basically just one for kids? And if so, couldn't be prescribed off label at larger doses for adults if it need be?

https://www.xenon-pharma.com/product-pipeline/xen496-for-epilepsy/

Yesss this company is one to keep an eye on for sure as they are much further along in their clinical trials. I emailed them a couple of months ago but never received a reply.

 

[Autumnly]

Why is no one talking about XEN-496? If people want a retigabine reformulation, isn't that basically just one for kids? And if so, couldn't be prescribed off label at larger doses for adults if it need be?

https://www.xenon-pharma.com/product-pipeline/xen496-for-epilepsy/

I couldn't find a thread specifically about XEN-496 but here's a thread about XEN-1101 which is "a differentiated Kv7 potassium channel modulator, for the treatment of epilepsy and potentially other neurological disorders" and currently in Phase 2 and XEN-496 is also being mentioned.

• "XEN1101's unique composition is chemically designed to improve upon potency, selectivity and pharmacokinetics, or PK, of ezogabine [ezogabine is also known as retigabine], and is not expected to have ezogabine's composition-specific tissue pigmentation effects." source

(Just in case anyone wants to read more about XEN-1101.)

 

[Born To Slay]

I couldn't find a thread specifically about XEN-496 but here's a thread about XEN-1101 which is "a differentiated Kv7 potassium channel modulator, for the treatment of epilepsy and potentially other neurological disorders" and currently in Phase 2 and XEN-496 is also being mentioned.

• "XEN1101's unique composition is chemically designed to improve upon potency, selectivity and pharmacokinetics, or PK, of ezogabine [ezogabine is also known as retigabine], and is not expected to have ezogabine's composition-specific tissue pigmentation effects." source

(Just in case anyone wants to read more about XEN-1101.)

It seems XEN-496 is very similar except it's about to go into Phase 3, it's for a rare form of pediatric epilepsy.

 

[Born To Slay]

Yesss this company is one to keep an eye on for sure as they are much further along in their clinical trials. I emailed them a couple of months ago but never received a reply.

Honestly, it wouldn't be surprising if they got a drug in the next few years. Between this and FX-322, seems like a lot of reason to be hopeful. If only our ears could've waited a little longer to crap out.

 

[serendipity1996]

Honestly, it wouldn't be surprising if they got a drug in the next few years. Between this and FX-322, seems like a lot of reason to be hopeful. If only our ears could've waited a little longer to crap out.

Also Sound Pharmaceuticals have a phrase 3 Meniere's drug that could be beneficial for inflammation related to noise-induced hearing loss.

 

[Lucifer]

@Born To Slay

Thanks for mentioning XEN-496. Did not expect a new Retigabine drug to come out soon.

Maybe when there is more news about XEN-496 we should create a thread.

FX-322, OTO-413 and XEN-496 will come out nearly around the same time.

Here is some information about XEN-496
https://www.xenon-pharma.com/product-pipeline/xen496-for-epilepsy/

Also there is an article about Phase 3 trials but it cost money to view.
https://adisinsight.springer.com/trials/700299624

 

[Born To Slay]

@Born To Slay

Thanks for mentioning XEN-496. Did not expect a new Retigabine drug to come out soon.

Maybe when there is more news about XEN-496 we should create a thread.

FX-322, OTO-413 and XEN-496 will come out nearly around the same time.

Here is some information about XEN-496
https://www.xenon-pharma.com/product-pipeline/xen496-for-epilepsy/

Also there is an article about Phase 3 trials but it cost money to view.
https://adisinsight.springer.com/trials/700299624

I thought OTO-413 was expected to come out later than the others?

 

[Lucifer]

I thought OTO-413 was expected to come out later than the others?

Yes most likely a year or two after FX-322 comes out.

 

[Born To Slay]

Yes most likely a year or two after FX-322 comes out.

That's still not bad though, if FX-322 even partially cures us and we have retigabine to hold us over until then. We're going to be saved.

 

[ajc]

That's still not bad though, if FX-322 even partially cures us and we have retigabine to hold us over until then. We're going to be saved.

Neither FX-322 nor Retigabine or RL-81 is going to save us.

We will all die with tinnitus being the last sound we hear. Trust me.

 

[Born To Slay]

Neither FX-322 nor Retigabine or RL-81 is going to save us.

We will all die with tinnitus being the last sound we hear. Trust me.

I can't Imagine why you'd take such a position in light of the news that we're going to be saved in a few years.

 

[ASilverLight]

Let's not shoot down every bit of research, especially when some have already shown to make a difference. Some realistic hope is much needed and pretty much the only reason I'm holding on.

 

[Born To Slay]

Let's not shoot down every bit of research, especially when some have already shown to make a difference. Some realistic hope is much needed and pretty much the only reason I'm holding on.

Totally agree and I want to emphasize that we have good reason to be hopeful! Frequency Therapeutics wouldn't have their guy come on Tinnitus Talk Podcast if there wasn't reason to believe good news is coming. Retigabine has a good track record, people's stories are here on Tinnitus Talk to read and we're going to get a stronger, safer version. This is all possible by 2023, we're going to be saved people! This will be a bad dream soon. We just have to hold tight, help is on the way.

 

[Lucifer]

A decade ago there was not much in terms of regeneration hearing medicine and now there is actually hope that these drugs might even work.

We know FX-322 and Audion Therapeutics actually restore people's hearing and after Phase 2a trials we will know more about whether it works for tinnitus and maybe hyperacusis in the future.

I understand @ajc that you are skeptical that these drugs might not work and you might be right but so far researchers/scientists have already got proof that these drugs work to restore hearing.

 

[dan]

Neither FX-322 nor Retigabine or RL-81 is going to save us.

We will all die with tinnitus being the last sound we hear. Trust me.

Valeri had great relief from Retigabine, so that already proves you wrong... not all of us will die with severe tinnitus.

 

[serendipity1996]

Yeah, I mean the landscape has really changed for the better particularly over the past decade. 10 years ago there were barely any biotechs/pharma industry interest in the hearing industry... hell, even back in 2016 when I first joined this forum there were barely any companies in clinical trials and the most hyped thing was that dodgy Minbo Shin guy's solution haha. I think it's wise to temper your enthusiasm to a degree but I don't see the reason for unfounded pessimism and cynicism.

 

[Born To Slay]

Valeri had great relief from Retigabine, so that already proves you wrong... not all of us will die with severe tinnitus.

Didn't valeri also have pain hyperacusis?