• This Saturday, November 16, you have the chance to ask Tinnitus Quest anything.

    The entire Executive Board, including Dr. Dirk de Ridder and Dr. Hamid Djalilian are taking part.

    The event takes place 7 AM Pacific, 9 AM Central, 10 AM Eastern, 3 PM UK (GMT).

    ➡️ Read More & Register!

Retigabine (Trobalt, Potiga) — General Discussion

Hey @Rich L I think you are mixing me up with @Danny Boy. :)

Sorry, yes I did stuff that quote up didn't I! :oops: My apologizes @dboy .

I'll try again, @Danny Boy ,
then why are so many people trialling Autifony's drug not having an effect?

What do you mean so many people? I have only read of two on this forum that are trialing with Autifony and the chances that they both have placebo is extremely high!

Please be more careful with misinformed opinions that are very misleading and untrue!
 
The last 2 days i had slight edema in my hands and foots and my weight increased.
I got exams for creatinine clearance & BUN and was increased indicating renal pre/failure.
Before taking trobalt these exams was ultra clear with none sign of renal problem.
So be careful with retigabine do exams for renal function once every 10 days to be sure that all are ok.

With all due respect... As I have been more or less stating for a while now, I personally believe you have too many variables/meds/factors stirring around in the pot to make any blanket statements about what is and what is not being caused by Retigabine. There are too many interactive potentials, and not nearly enough "stability" of sequence" in what I am at least reading into your posts.

Indeed we are not pretending this Retigabine evaluation here at TT is a "trial" in much other than attempt and hopes of some insights and directions. Remember, there is a complete lack of screening requirements (you just have to get hold of the stuff!), there is huge variability in starting points for each trialee, and there's the multi-mixture of "other" things people are taking along with it. Let's not even get into individual dosing regimens! (The aspirin approach, all the way to the fixed "1200 mg/day effective dose requirement"). Etc., etc.

So to sum up...The less "other" meds, supplements, lifestyle changes, misc. stuff, etc. introduced along the way, the better in terms of evaluation. If the only "control" we have in each case is "ourselves", then it is just basic common sense that the more we "control" the "control" and keep stuff as clean and clear as possible, the more of an objectively subjective assessment we can make of the Retigabine variable itself!

My two cents... Best, Zimichael
 
With all due respect... As I have been more or less stating for a while now, I personally believe you have too many variables/meds/factors stirring around in the pot to make any blanket statements about what is and what is not being caused by Retigabine. There are too many interactive potentials, and not nearly enough "stability" of sequence" in what I am at least reading into your posts.

Indeed we are not pretending this Retigabine evaluation here at TT is a "trial" in much other than attempt and hopes of some insights and directions. Remember, there is a complete lack of screening requirements (you just have to get hold of the stuff!), there is huge variability in starting points for each trialee, and there's the multi-mixture of "other" things people are taking along with it. Let's not even get into individual dosing regimens! (The aspirin approach, all the way to the fixed "1200 mg/day effective dose requirement"). Etc., etc.

So to sum up...The less "other" meds, supplements, lifestyle changes, misc. stuff, etc. introduced along the way, the better in terms of evaluation. If the only "control" we have in each case is "ourselves", then it is just basic common sense that the more we "control" the "control" and keep stuff as clean and clear as possible, the more of an objectively subjective assessment we can make of the Retigabine variable itself!

My two cents... Best, Zimichael

Agree completely, Quite frankly, if any decision by a higher authority to at least give the go ahead for a proper trial for this stuff was made, then all of our amateur data would only have been taken into consideration to come to this decision anyway, and our notes would only be kept as a matter of interest!

I really think that those that are trialing this, and taking other medication along side, should, (with due respect), be very careful with their annual reports and not make judgmental opinions regarding Retigabine.
 
I've been a passive reader on this forum for some time now. After reading about some good experiences on this forum, i decided to go to my doctor to ask for Trobalt. To my surprise he was willing to try, and prescripted me 100mg trobalt to start with. Zero pharmacies had these in stock so could not start until today.
How long time (if any) should i expect before hearing any improvements, Taking 100mg x3/day.
And for how long should i take the 100mg before changing to 200mg if needed?

well you should at least use 100mg for a week, if you can you can raise 5day 100, 5 day 150, then 200

@Christian78 are you back on trobalt?

yes. but i get something like parestesia in the evening after 20:00 and worst is at 22-01 after midnight... severe pains and numbness in legs. they all go away as soon as i stand up...

oversensitivity of neurons dont go away

Agree completely, Quite frankly, if any decision by a higher authority to at least give the go ahead for a proper trial for this stuff was made, then all of our amateur data would only have been taken into consideration to come to this decision anyway, and our notes would only be kept as a matter of interest!

I really think that those that are trialing this, and taking other medication along side, should, (with due respect), be very careful with their annual reports and not make judgmental opinions regarding Retigabine.

Good side of retigabine is not only lovering tinnitus, but gives you energy and forse you to stop thinking about tinnitus, bige you hope and works as antidepressive
 
ough i hope it goes away, is it documented in the RTG side effects? @Danny Boy is that happening to you too? I think u both are in the top 5 ranking of total ingestion of RTG, not seems a chance

daniel doesn't know what is it, because it is burning like someone put you 10 minutes in +1C river up to testiceles and thean took you out so you skin is burning, and rest of body is over sensitive, f.ex. small elbow problem look like a huge elbow injury. leaning on hands cause pain, walking on toes cause pain

parestesia

daniel have eaten more trobalt than me counted in dosage and total amount
 
This is very serious ?
Is renal failure serious? Absolutely. Hopefully 1MW's lab will return to normal off the drug.

stephen nagler
 
@SoulStation Thank you. Question, how do I post on Users Expirience??
You complete the forms. It automatically submits the responses to the User Experiences thread.

First you should complete this New User Form (only once):
https://www.tinnitustalk.com/forms/retigabine-new-participant-form.1/respond

And then this Progress Form as often and many times as you'd like over the duration of your treatment:
https://www.tinnitustalk.com/forms/retigabine-progress-form.3/respond

Has anyone been in contact with @Mpt lately or know how he is doing is he still T free?
Yeah he is still tinnitus free.
 
You complete the forms. It automatically submits the responses to the User Experiences thread.

First you should complete this New User Form (only once):
https://www.tinnitustalk.com/forms/retigabine-new-participant-form.1/respond

And then this Progress Form as often and many times as you'd like over the duration of your treatment:
https://www.tinnitustalk.com/forms/retigabine-progress-form.3/respond


Yeah he is still tinnitus free.
Thank you @Markku you're doing an increditable work here.
 
7 days on 100, than raise 100+200+100, you just raise it like that, and then nex week you can go to 200x3....

they recommend start of mg per day

week one 300/d
week 2 450/d
week 3 600

150/d is what it recommended to be raised by them you can do slower
 
OK edema in foots/hands resolving after stopping RTG not problem here.
But i suggest to everyone taking RTG to get biochemical exams for BUN & creatinine clearance in regular basis.
I tested another possible treatment with flumazenil and now i have 0 T.
I know this is probably temporary and not permanent but i will continue this experiment.
 
OK edema in foots/hands resolving after stopping RTG not problem here.
But i suggest to everyone taking RTG to get biochemical exams for BUN & creatinine clearance in regular basis.
I tested another possible treatment with flumazenil and now i have 0 T.
I know this is probably temporary and not permanent but i will continue this experiment.
Are you a doctor? How do you have access to all these meds?
 
no iam not doctor but i have access because i know doctors the only med i have prob to find is RTG
the others are easy to obtain.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now