Retigabine (Trobalt, Potiga) — General Discussion

[SteveSkis92]

Trobalt on the way

Please keep us updated with your experience bud. Definitely interested in your progress. You've probably said this already but do you have any hearing loss?

 

[uae96]

Please keep us updated with your experience bud. Definitely interested in your progress. You've probably said this already but do you have any hearing loss?

No I don't

 

[Bertman]

Just wondering if anyone has experienced any kind of protection against spikes from loud noise like @Juan Carlos

 

[gintas]

i taking 300 trobalt per day 50x100x150 and 200mg of Finlepsin( carbamazepinum). Finlepsin i think also helps.

 

[RaZaH]

I am on Trobalt , experiencing some intense spiking, contemplating whether to stop this experiment or what to do ?
Any thoughts ?

 

[nills]

I am on Trobalt , experiencing some intense spiking, contemplating whether to stop this experiment or what to do ?
Any thoughts ?

how much are you taking? I would not be alarmed ... only 1 has reported coming worse out of Trobalt ... and the one that did are taking cocktails of dangerous drugs ...

 

[RaZaH]

I just upped my dosage from 3x100mg to 3x 200mg ....today I am back on 100mg , quite startled to be honest.

 

[nills]

I just upped my dosage from 3x100mg to 3x 200mg ....today I am back on 100mg , quite startled to be honest.

you are at baby doses ... don`t worry! ... things have to change while taking this drug ... sounds will transform, volumes will go up and down etc. ... as long as you not mixing it with other brain chemicals I feel there is no need to worry...

jumping from 300 a day to 600 a day is a massive jump ... take it slower.

 

[RaZaH]

I know ...Im such a baby when it comes to drugs , seriously , its annoying, can never take anything for a headache or anything , I just fall asleep

Thanks for pitching in mate.

 

[valeri]

I am on Trobalt , experiencing some intense spiking, contemplating whether to stop this experiment or what to do ?
Any thoughts ?

Even though I wasn't on it for very long time, I would say Trobalt is a bit of a hit and miss! Why I don't know!
What works one day goes down the drain next.
If your t is not louder than before Trobalt than its probably just a usual spike!

 

[RaZaH]

Louder is hard to quantify , certainly was super piercing and intense.

 

[OnceUponaTime]

jumping from 300 a day to 600 a day is a massive jump ... take it slower.

He might be right... For what I have read here this has happened to many that have tried Trobalt.

Wondering if anyone has written a specific day by day formula on amounts of Trobalt to take for at least a couple of months (with tapering up and down) ??? @Danny Boy @papu

Stay strong... don't quit! Let us know how you feel by the end of the day. Big hug!

 

[Mic]

Look what I have found on Pubmed (your daily website for scientific articles):

Potassium channels as promising new targets for pharmacologic treatment of tinnitus: Can internet-based "crowd sensing" initiated by patients speed up the transition from bench to bedside?

Researchers have finally noticed this 'little' experiment that is going on with Retigabine.

 

[Martin69]

Look what I have found on Pubmed (your daily website for scientific articles):

Potassium channels as promising new targets for pharmacologic treatment of tinnitus: Can internet-based "crowd sensing" initiated by patients speed up the transition from bench to bedside?

Researchers have finally noticed this 'little' experiment that is going on with Retigabine.

Good finding.
It summarizes where we are right now - even though AUT00063 is still mentioned.
SF0034 is the most promising one. Never heard of Maxipost.

 

[valeri]

Good finding.
It summarizes where we are right now - even though AUT00063 is still mentioned.
SF0034 is the most promising one. Never heard of Maxipost.

Unfortunately SF0034 is nowhere near human trials!

 

[Bertman]

Unfortunately SF0034 is nowhere near human trials!

And from what I understand it is an epilepsy first drug, so it may not even be trailed for tinnitus at all. The only situations I can see it helping us is it makes it to market for epilepsy and we get to try it, or it fails epileptic trials and somewhere down the road (because trials cost a huge amount of money) they trial it for tinnitus.

 

[Mark662]

Unfortunately SF0034 is nowhere near human trials!

This article states otherwise

http://www.enttoday.org/article/new-drug-may-help-prevent-treat-tinnitus/

 

[valeri]

This article states otherwise

http://www.enttoday.org/article/new-drug-may-help-prevent-treat-tinnitus/

Let's hope I'm wrong and you're right

 

[RaZaH]

Do i remember correctly that someone said they got hypercusis from using Trobalt or am i imagining that ?

 

[Dana]

I think DannyBoy said that.

 

[attheedgeofscience]

Look what I have found on Pubmed (your daily website for scientific articles):

Apparently TinnitusTalk reading comes full circle every other page and for the same thread no less:

• www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-general-discussion.5074/page-223#post-150488
• www.tinnitustalk.com/threads/retigabine-trobalt-potiga-%E2%80%94-general-discussion.5074/page-222#post-149767

Researchers have finally noticed this 'little' experiment that is going on with Retigabine.

These are actually the researchers that [USERGROUP=11]@Team Trobalt[/USERGROUP] have been corresponding with for the past year (and still do - as late as yesterday we had an e-mail exchange with one of the members of TRI regarding an initiative). See the thread regarding the petition to the ATA.

The full manuscript is attached; TinnitusTalk is mentioned on page 7.

Since there appears to be a lack of general awareness on this topic, perhaps it would make sense to issue an alert and/or Facebook update to all members (mentioning the manuscript on Retigabine). The manuscript originally had members of Team Trobalt as co-authors, but was reduced in scope as the data collected here on the forum could not be permitted for editorials.

The goal of the manuscript is/was to raise awareness for Kv-channel openers within academic circles and hence potentially pave the way for a study using volunteers.

attheedgeofscience
12/DEC/2015.

 

[Bertman]

@attheedgeofscience Probably isn't said enough but thank you, and everyone else, for the work you have done to help the tinnitus community.

 

[just1morething]

The goal of the manuscript is/was to raise awareness for Kv-channel openers within academic circles and hence potentially pave the way for a study using volunteers.

@attheedgeofscience Are you still taking Trobalt? Did it help your tinnitus or inconclusive?

 

[uae96]

It would be nice if @Mpt came back and reported his progress
I am wondering how long I should be on this drug for it to give a maximum / peak effect

 

[RaZaH]

@uae96 for how long have you been on it already and what effects so far ?

 

[uae96]

@uae96 for how long have you been on it already and what effects so far ?

I haven't recieved it yet , but it's on the way , I will report back on here
What about you ? How's you're progress doing ?

 

[RaZaH]

Its bumpy , as in works great for a while and then not so much , not on a full dosage yet though.
Get occasional silence, mostly like 30-40 minutes after taking .
I am hoping for long term benefits , not worth it for the short term relief although its "interesting" to get some silence and remember who you are

 

[OnceUponaTime]

@attheedgeofscience So grateful for what you are doing. Thank you is not enough. Big Hug.

 

[valeri]

The goal of the manuscript is/was to raise awareness for Kv-channel openers within academic circles and hence potentially pave the way for a study using volunteers.

attheedgeofscience
12/DEC/2015.

as far as I'm aware pprof Moore is/was willing to do human trials with retigabine.
Two things stopping him:
1. Money and
2. Thanos T who has been sitting on the fence for quite some time now and doing shit ass with SF0034, modified version of Retigabine for those who don't know.

And ATA is not really jumping the wagon to investigate options either!

 

[just1morething]

doing shit ass with SF0034, modified version of Retigabine for those who don't know.

Thanks, I didn't know that.