Retigabine (Trobalt, Potiga) — General Discussion

[Zimichael]

I just got this email from Autifony five minutes ago (seems 100% relevant to this thread)...and my Reply, as it does not seem like Charles Large would mind or that it is not "public" information (or no way I would break confidence). Have posted on the Autifony thread too...

Dear Michael,
Thankyou for your email and your interest in Autifony's clinical trial of AUT00063 for tinnitus. We have received a number of contacts regarding this trial, and I want to ensure that I can respond personally to each one. Autifony's UK trial is planned to start in October this year and will involve a number of UK sites. More information about the trial will be made available via Autifony's web site in the next few weeks. Please do check back with the website at that time. We are not currently planning studies in the US, but if the first trial is successfull then I expect we will extend to the US for further studies.

My best regards,

Charles Large


Thank you... I will make this info known (as it does not seem private) on the tinnitus website I am heavily involved in so you don't get flooded with similar emails to mine asking just the same question I did. (Probably someone has already posted it though, as news travels fast).
Good luck with your trials, and indeed us tinnitus folks are SUPER excited about where this is all heading. I sure hope that somehow (if as successful as all hope) AUT00063 can be fast-tracked somehow. For one, the Veterans Administration here in the USA is "bleeding" huge amounts of $$$ for tinnitus injury. It is their BIGGEST single expense item, and forecast to grow to a staggering figure by 2017. (I'm sure you are aware of the report).
Best to you all...and "do hurry" if you can.
Michael M.

So there we have it folks...No USA trial in the works yet.

Best, Zimichael

 

[Zimichael]

You started last week, right? Do you mean you're on 300mg total (100mg x 3/day)?

Agree here re posting dosages "trialees"...To help us figure it out can you all please say when mentioning this aspect, what your dosage is and how many times a day you are taking that dosage.

Thanks very much. Zimichael

 

[SoulStation]

You started last week, right? Do you mean you're on 300mg total (100mg x 3/day)?

Yup that's right.

 

[Hengist]

Only if someone is interested. These are the countries where Trobalt is available in Europe:

"The medicine is available as tablets in the following Member States: Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, Finland, France, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Poland, Romania, Slovakia, Slovenia, Spain, Sweden and the United Kingdom."

Source: http://www.ema.europa.eu/ema/index....news_detail_001802.jsp&mid=WC0b01ac058004d5c1

This information is wrong as it is available in Croatia.

 

[Martin69]

This information is wrong as it is available in Croatia.

Do you take it or plan to?

 

[linearb]

I believe that if AUT00063 were to get approved in the UK, US patients would be able to order it directly from the UK pretty much instantly, as people are allowed to import medications for personal use which are not approved in the US, as long as they don't fall under the controlled substances act (which AUT00063 seems unlikely to).

I have imported Serc/betahistine from the UK in this manner.

 

[cdog]

I believe that if AUT00063 were to get approved in the UK, US patients would be able to order it directly from the UK pretty much instantly, as people are allowed to import medications for personal use which are not approved in the US, as long as they don't fall under the controlled substances act (which AUT00063 seems unlikely to).

I have imported Serc/betahistine from the UK in this manner.

On that note, why wait for UK approval at all? Just manufacture it in a country that has no drug approval policies, and order it from there

 

[Hengist]

On that note, why wait for UK approval at all? Just manufacture it in a country that has no drug approval policies, and order it from there

There are no countries that have free market.

 

[cdog]

There are no countries that have free market.

Surely some island nation or something like that would do.

 

[dan]

Autifony is under patent, any attempt to duplicate will result in a ban.
On another note, tinnitus is like solar panels:
Shade Can Damage Solar Panels
Individual solar panel cells are very sensitive and do not like being constantly switched on and off. When some cells in the panel are not working the other cells work harder to try to compensate. As a result the solar cells that are not in shade have a tendency to overheat and burn out. There is a solution to this and that is to buy solar panels that are fitted with bypass diodes. However, even then shade is not good for solar panels, so should be avoided if possible.

 

[Hengist]

Surely some island nation or something like that would do.

Nope and even if there would be a island nation in the middle of the ocean, who would go there to work and how would you smuggle your stuff into more populated areas? I mean it would be an easier job just making illegal stuff in normal countries.

 

[linearb]

On that note, why wait for UK approval at all? Just manufacture it in a country that has no drug approval policies, and order it from there

I have a friend who was unwilling to wait for the FDA to rubber-stamp Suvorexant, so he paid a Chinese lab $1000 to make a gram of it for him.

If I could get a gram of AUT00063 for $1k I'd think about it, but as far as I know the molecule hasn't been published anywhere, let alone a ground-up synthesis.

There are no countries that have free market

Oh, I don't know about that, I'd say China is pretty close. They manufacture a ton of things that are straight-up schedule-I controlled substances in most of the world -- and banned domestically in China -- for export. Want a 25kg drum of 2C-B drop shipped to you? China is your friend.

edit: I just googled "buy 2c-b online china" and immediately found someone who claims to sell 10KG for $8,000. That's an extremely illegal psychedelic that's been on the books for 30 years. I'm sure they'd be happy to make you some AUT00063, too, if they had a CAS# to work with.

 

[Hengist]

I have a friend who was unwilling to wait for the FDA to rubber-stamp Suvorexant, so he paid a Chinese lab $1000 to make a gram of it for him.

If I could get a gram of AUT00063 for $1k I'd think about it, but as far as I know the molecule hasn't been published anywhere, let alone a ground-up synthesis.


Oh, I don't know about that, I'd say China is pretty close. They manufacture a ton of things that are straight-up schedule-I controlled substances in most of the world -- and banned domestically in China -- for export. Want a 25kg drum of 2C-B drop shipped to you? China is your friend.

edit: I just googled "buy 2c-b online china" and immediately found someone who claims to sell 10KG for $8,000. That's an extremely illegal psychedelic that's been on the books for 30 years. I'm sure they'd be happy to make you some AUT00063, too, if they had a CAS# to work with.

You mean buy some "2c-b" online... most of chinese stuff is trash, if their food is poison than their pharmaceuticals are a cathegory I do not even wanna think about.

 

[Grace]

I have a friend who was unwilling to wait for the FDA to rubber-stamp Suvorexant, so he paid a Chinese lab $1000 to make a gram of it for him.

If I could get a gram of AUT00063 for $1k I'd think about it, but as far as I know the molecule hasn't been published anywhere, let alone a ground-up synthesis.


Oh, I don't know about that, I'd say China is pretty close. They manufacture a ton of things that are straight-up schedule-I controlled substances in most of the world -- and banned domestically in China -- for export. Want a 25kg drum of 2C-B drop shipped to you? China is your friend.

edit: I just googled "buy 2c-b online china" and immediately found someone who claims to sell 10KG for $8,000. That's an extremely illegal psychedelic that's been on the books for 30 years. I'm sure they'd be happy to make you some AUT00063, too, if they had a CAS# to work with.

If this shit works, let alone cures/takes 5o to 80% of t volume down for everyone.. Then it will get to the u.s cause we have 50 million people with T and it would just make the company more money. if not, expect all american citizens to be moving to the u.k

 

[Rico Napoli]

Having a sibling working for the FDA for over 30 years I wouldn't hold my breath unless the company was Forrest Labs or some other American Big Pharma. Foreign company means no kickbacks in our corrupt system.

 

[bedouin]

I just got this email from Autifony five minutes ago (seems 100% relevant to this thread)...and my Reply, as it does not seem like Charles Large would mind or that it is not "public" information (or no way I would break confidence). Have posted on the Autifony thread too...

Dear Michael,
Thankyou for your email and your interest in Autifony's clinical trial of AUT00063 for tinnitus. We have received a number of contacts regarding this trial, and I want to ensure that I can respond personally to each one. Autifony's UK trial is planned to start in October this year and will involve a number of UK sites. More information about the trial will be made available via Autifony's web site in the next few weeks. Please do check back with the website at that time. We are not currently planning studies in the US, but if the first trial is successfull then I expect we will extend to the US for further studies.

My best regards,

Charles Large


Thank you... I will make this info known (as it does not seem private) on the tinnitus website I am heavily involved in so you don't get flooded with similar emails to mine asking just the same question I did. (Probably someone has already posted it though, as news travels fast).
Good luck with your trials, and indeed us tinnitus folks are SUPER excited about where this is all heading. I sure hope that somehow (if as successful as all hope) AUT00063 can be fast-tracked somehow. For one, the Veterans Administration here in the USA is "bleeding" huge amounts of $$$ for tinnitus injury. It is their BIGGEST single expense item, and forecast to grow to a staggering figure by 2017. (I'm sure you are aware of the report).
Best to you all...and "do hurry" if you can.
Michael M.

So there we have it folks...No USA trial in the works yet.

Best, Zimichael

I received the same reply minus this section:

"We are not currently planning studies in the US, but if the first trial is successfull then I expect we will extend to the US for further studies."

Cut and paste i'm afraid
But no problem. We wait for the website update with baited breath.

 

[william2]

what's the MOST optimistic timescale on anybody getting AUT00063?
If phase 2 has problems(strictly hypothetical worst-case-scenario of course) , can we still get it by any means?
has anybody got hold of retigabine in the UK yet?
I have friends who would sell their houses and bodyparts to get anything that works,
they dont care about side-effects
from what i've read if you know the molecule it is poss to have it made

also, just a thought, but if aut00063 is patented, as it will be of course,
will its structure not be available as public domain records

 

[Jay M]

what's the MOST optimistic timescale on anybody getting AUT00063?
If phase 2 has problems(strictly hypothetical worst-case-scenario of course) , can we still get it by any means?
has anybody got hold of retigabine in the UK yet?
I have friends who would sell their houses and bodyparts to get anything that works,
they dont care about side-effects
from what i've read if you know the molecule it is poss to have it made

also, just a thought, but if aut00063 is patented, as it will be of course,
will its structure not be available as public domain records

2018 earliest I would imagine.

 

[Christian78]

terible is if such bad prediction is for autifony. but anyway as 2020 closes we will get into war so it want be needed at all. BTW trobalt is definitely killer for those who use brain to study!

 

[SoulStation]

when do u think there will be a cure for tinnitus cause i have acute and its gonna suck if i have to wait cause then mine will become cronic and be harder to cure and thats bs and i cant imagine having tinnitus for years i cant even put up with it for 3 months and its just supid how i got it and only in my left ear never knew tinnitus just comes out of no where and u got to live with it cause its always never gonna go away so im hoping for a cure in 2-5 years tops cause idk if i can continue my life like this and i prob wont be able to get Retigabine even tho im in the US cause heard u gotta have a record of seizures or something would like to try it since im in the acute stages

Look up the study from university of Pittsburgg that was published and show your Gp that and say you're desperate. He/she might let you try. But AM101 is also a suggestion or HBOT.

 

[Eric Fridley]

Look up the study from university of Pittsburgg that was published and show your Gp that and say you're desperate. He/she might let you try. But AM101 is also a suggestion or HBOT.

well i don't have a printer so i really cant print out anything i dont see why i cant just ask him and tell him im desperate he should at least let me try it but for right now im gonna goto my gp to see if he can get me into a tmj specialist to see if i can get rid of it using splints since everything is on my left side including my tmj idk why it wouldnt be the cause but i guess u never know if that dont work then ill go back and tell him i wanna try retigabine

 

[Jay M]

terible is if such bad prediction is for autifony. but anyway as 2020 closes we will get into war so it want be needed at all. BTW trobalt is definitely killer for those who use brain to study!

Im not clear are you still taking trobalt? If so what is your current T situation ? Thx

 

[william2]

how many chronic cases here have been helped by Retigabine?

 

[Johno]

how many chronic cases here have been helped by Retigabine?

Too early to say. I have chronic T and Im on low doses of retigabine only few days.

 

[william2]

thanks johno, i really do wish you the best of luck
i hope it helps you, keep us informed

 

[cdog]

BTW trobalt is definitely killer for those who use brain to study!

Why is that?

 

[rtwombly]

so i read a article and it says
How close are we to finding a cure for tinnitus?
At the moment, we are closer than ever to finding a cure for tinnitus. I thus expect that the puzzle of how tinnitus arises will be solved within the next decade, and that this will lead to true targeted tinnitus treatments. so im guessing there wont be a cure int he next decade just a treatment for it and AUT00063 is only for people with hearing loss and acoustic trauma but will it help people with unknown tinnitus?

That one guy know as much about tomorrow as you and I do. Keep calm, keep watching this space. We may find out the cure for tinnitus is...Retigabine. Or AUT00063. In either case, the cure has already been found, just not thoroughly tested yet. Things DO get cured. Don't forget that. Polio and smallpox are both practically extinct, people take pills for ulcers, it's like we're livin' in the future, man!

It's tough to wait but many of us on this thread who have been reading the literature are convinced the hyperactive nerve theory is correct and we're just months from having clinical proof - or a sizable collection of anecdotal evidence, at least. Like you, I don't know what gave me tinnitus. I'm doing everything I can to fight it naturally - eating right, taking ALA (get on that if you're not already, I take 100mg morning and night), and going to a chiropractic specialist (atlas orthoganol helped, next week I start treatment with a SOTO) - and I'll be talking to a doc about Retigabine Tuesday. Other than that, what more can I do? Worrying does nothing but make things worse.

 

[cdog]

I'm doing everything I can to fight it naturally - eating right, taking ALA (get on that if you're not already, I take 100mg morning and night)

I'm taking NAC (2000mg/day). Is that much different than ALA (i.e. do you think I be taking ALA instead, or in combination with it)?

and going to a chiropractic specialist (atlas orthoganol helped, next week I start treatment with a SOTO)

Do you think atlas orthoganol would potentially help with noise induced tinnitus (being that atlas is about spine related correction)? Also, what's SOTO?

 

[SweetPeach]

what is the easiest way of getting retigabine in canada? thank you so much.

 

[lapidus]

Why is that?

What Christian meant was that it's not very positive to be on Trobalt while studying since the side effects he has experienced is that you get quite "slow" and a little dimwitted of it. He didnt mean "killer" as in the english slang for something good like "hey this videogame is killer man".