Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

isn't liver toxicity temporary? when you stop medicine, it goes away?

I guess yes, otherways wouldn't be on the market. but i have no idea how long it takes to go away. Probably @attheedgeofscience can answer better than me

 

[1MW]

I will not take flupirtine in daily basis only in cycles or when i have worsening.
flupirtine is like a combination of retigabine+benzo gives a nice feeling in general except of T improvement.
The combination of RTG + flupirtine is very strong killed 4/5 of my T and i had really bad T(9/10).
Also i have improvement for example today iam at 0.5/10 without drugs but this can be sportaneous not from drugs.

 

[Juan Carlos]

I will not take flupirtine in daily basis only in cycles or when i have worsening.
flupirtine is like a combination of retigabine+benzo gives a nice feeling in general except of T improvement.
The combination of RTG + flupirtine is very strong killed 4/5 of my T and i had really bad T(9/10).
Also i have improvement for example today iam at 0.5/10 without drugs but this can be sportaneous not from drugs.

what about @Stink question? any idea? what would you consider to be safe on long term, maybe 2 days per week ? and rest 5?

 

[1MW]

The level of toxicity can be determined by blood exams of liver enzymes.
If the exams are good you can take it if there is some alteration you must stop it.
It is not standard how long you can take it without making damage to liver.
The good is that if liver enzymes are found early in exams elevated and stop the drug
you will recover completelly.

 

[attheedgeofscience]

I guess yes, otherways wouldn't be on the market. but i have no idea how long it takes to go away. Probably @attheedgeofscience can answer better than me

I'd prefer not to comment on these types of medical questions (I ain't a doc... ).

On a separate note, I would - however - like to thank all those who, so far, took the time to share their Trobalt experience (and data). And in particular, I would like to thank especially...

@locoyeti
@Juan Carlos
@rtwombly
@Albertus

...for their detailed and informative reporting of the progress forms and solid contributions to the main forum thread on Trobalt!

attheedgeofscience
31/MAR/2015.

 

[Robb]

still have t, but is much lower than before RTG. i have had occasional spikes with H though, which have been bothersome, but they are far less frequent. on my good days i have near silence. i will have a better idea over the next few months if there is continuing improvement but it seems that basically the set point of my t has been shifted much lower. i am tentatively planning another round in November.

i am shifting my attention towards TMJ issues and also researching epilepsy, and this has lead me to not visit the forum as often. i am disappointed that more people have not tried RTG, and that those who do try have not done a good job of reporting their results.

Dear Locoyeti,

This is very encouraging! When was the last time you took RTG?
And how much did you take in total.

Very interesting and thanks for sharing your info!

Best Robb

 

[Juan Carlos]

Regarding doing another RTG round, now comes a question to me. Does anybody know if the long term side effects, aka violet nails, lips and so are acumulative. I mean, let say for example that if you take 24 month on a row o RTG at 900mg/day , you are likely to have that side effect on a 30% (this is an example).
If you take 2 months per year, after 12 years, will you have the same chances??

any guessings or thought about this? i hope i explaned well

 

[1MW]

Good question but nobody knows because it has not tested in that way retigabine

 

[65vwbus]

No idea if the violet/blue side effects are accumulative.
Got another question to add though! Is the skin staining caused by the colouring in the pills?
All the pills in their various sizes, other than the 200mg have indigo colouring in them.

One other thing I've noticed by accident in the past week, if I drink mango juice, the pain and tinnitus relief is better and lasts longer.

 

[undecided]

Regarding doing another RTG round, now comes a question to me. Does anybody know if the long term side effects, aka violet nails, lips and so are acumulative. I mean, let say for example that if you take 24 month on a row o RTG at 900mg/day , you are likely to have that side effect on a 30% (this is an example).
If you take 2 months per year, after 12 years, will you have the same chances??

any guessings or thought about this? i hope i explaned well

I would bet that the blue nails/lips are a result of consistently reduced blood flow to those areas of the body due to RTG. I don't know at what degree you experience it, but in my case I always get a slight numbness in the lips and the outer tips of my fingers after a dose.
The progressive effect of that numbness would (probably) be a discoloration of the relative area. But I'm guessing here obviously, in fact I have no idea if the numbness has anything to do with any anything.

Still, I believe that a more conservative use of RTG (say 400mg once a day) would be a safer bet.
I mean AUT00063 is basically an RTG rip-off and they only dose once daily.

 

[Christian78]

I mean AUT00063 is basically an RTG rip-off and they only dose once daily.

i hope you are right

 

[1MW]

Discoloring maybe due electrolytic distrurbance.
Some oxides/salts of metals used for pigmentation in foods and electrolytic disturbance
maybe accumulate these substances.
I think the effect is accumulative and dose dependent.
This happens to the extremes where reduced blood flow exists.
www.fda.gov/Drugs/DrugSafety/ucm349538.htm
www.fda.gov/ucm/groups/fdagov-public/documents/image/ucm349539.png
www.fda.gov/ucm/groups/fdagov-public/documents/image/ucm349540.png

One other known pigmentation i know is argyria
http://en.wikipedia.org/wiki/Argyria

 

[locoyeti]

I would bet that the blue nails/lips are a result of consistently reduced blood flow to those areas of the body due to RTG. I don't know at what degree you experience it, but in my case I always get a slight numbness in the lips and the outer tips of my fingers after a dose.
The progressive effect of that numbness would (probably) be a discoloration of the relative area. But I'm guessing here obviously, in fact I have no idea if the numbness has anything to do with any anything.

Still, I believe that a more conservative use of RTG (say 400mg once a day) would be a safer bet.
I mean AUT00063 is basically an RTG rip-off and they only dose once daily.

this is probably not the case, the blue areas would get necrotic (this isn't like frostbite). the body has multiple ways of getting around acute blood vessel blockage.

@benryu 's theory was that it was methemoglobin (deoxygenated hemoglobin). i am a bit skeptical but that could be the case. i think it has more to do with some metabolite of the drug preferentially binding to pigmented cells, whether they be in your eyes, lips, or skin. it is not currently know if it is accumulative or permanent. hopefully GSK will give us a follow up as to what their tests have concluded regarding the pigmentation issue.

@Juan Carlos have you experienced any pigmentation? i have had my retinas checked 4 times now and they have not found anything, and i have not seen any pigmentation on myself.

 

[linearb]

Regarding doing another RTG round, now comes a question to me. Does anybody know if the long term side effects, aka violet nails, lips and so are acumulative. I mean, let say for example that if you take 24 month on a row o RTG at 900mg/day , you are likely to have that side effect on a 30% (this is an example).
If you take 2 months per year, after 12 years, will you have the same chances??

speaking very generally I think negative effects from drugs are often dose dependent and cumulative, but until the mechanism for this is understood, I'm not sure if the risk can really be analyzed other than by looking at the numbers that are available. Maybe some people are more or less/likely to have that side effect for genetic reasons, or because of what they were exposed to growing up, too.

 

[Craig in Cali]

Hello. I'm sorry if this as been answered already, and I'm certain it has. However, I'm inherently ADD and don't want to read through all 143 pages of thus thread if possible. So, could someone direct me to what the recommendation for a minimal course of RGB is that would be effective?
How many mg? How many times per day? Take it for how long?

Thank you. 1 million apologies for my laziness in advance.

 

[1MW]

I permorfed again the experiment flupirtine vs retigabine.
The winner for sure to me is flupirtine.
Also flupirtine have shown some effect to retina depigmentation and there trials for
people suffer from this genetic condition

 

[Juan Carlos]

this is probably not the case, the blue areas would get necrotic (this isn't like frostbite). the body has multiple ways of getting around acute blood vessel blockage.

@benryu 's theory was that it was methemoglobin (deoxygenated hemoglobin). i am a bit skeptical but that could be the case. i think it has more to do with some metabolite of the drug preferentially binding to pigmented cells, whether they be in your eyes, lips, or skin. it is not currently know if it is accumulative or permanent. hopefully GSK will give us a follow up as to what their tests have concluded regarding the pigmentation issue.

@Juan Carlos have you experienced any pigmentation? i have had my retinas checked 4 times now and they have not found anything, and i have not seen any pigmentation on myself.

Nothing of course, otherways I woulded share in here. I also checked my eyes 2 times, even a view-field included, everything is perfect. I was just worried about that because for people who take very long term seems quite common in the studies, so if someone knew for sure if its safe take low dose for long term o few months per year that would be a good new

My T keeps quite low still, My T cause is probably stress related so now im taking things to calm my CNS, as magnesium citrate, Cinnarizine, cat claw, now i also sit in my original place in my office, last year i was in a more stressing place near my boss.. not sure how much lowering comes from RTG or from other factors, @locoyeti also had improvements after taper off, @Mpt also had improvements after taper off. @Danny Boy made a big jump down from 1200 to 400 and his T keeps very low. It seems we have improvements after taper.

@Albertus I hope you experience the same in the next weeks, keep us informed please

 

[Juan Carlos]

I permorfed again the experiment flupirtine vs retigabine.
The winner for sure to me is flupirtine.
Also flupirtine have shown some effect to retina depigmentation and there trials for
people suffer from this genetic condition

thats good news, hope makes permanente changes, in that case maybe worth do one week treatment.
Regarding "effect" on retina, you mean is good for treating it or you mean it Causes depigmentation?

 

[1MW]

Is for treating for people who have this genetic condition.
@Viking reported that retigabine is superior to flupirtine

 

[nills]

Hello. I'm sorry if this as been answered already, and I'm certain it has. However, I'm inherently ADD and don't want to read through all 143 pages of thus thread if possible. So, could someone direct me to what the recommendation for a minimal course of RGB is that would be effective?
How many mg? How many times per day? Take it for how long?

Thank you. 1 million apologies for my laziness in advance.

few months (2-3-4) = work up slowly from 50mg to 50mg x 3 a day to whatever your body can handle sideffects wise and heart wise to 300mg x 3 a day or even 400mg x 3 ... taper down really slow. when you want to stop. See doctor, measure QT rate (you could die if Trobalt messes this up) Consider all side effect thoroughly compared to knowing this sin`t a cure but a temporary relief. see doctor first - see doctor first - see doctor first!

Read as much as you can in this thread!!!

 

[Rono1943]

G'day Hengist... i am from the land down under... Australia...

Not available in Aus Trobalt

 

[Christian78]

did anyone used trobalt with keppra, or can they be combined, or can you help mith link for it?

please

 

[Christian78]

today i got information from @Danny Boy , it is April fools do you agree it is cruel?

There's a new product coming out soon called norbalt it's basically an improved version of trobalt, which is more precise than trobalt. It's been used on monkey's and been proven to cure tinnitus. It's being developed by GSK by Doctor Charles large Brother, Hans Large. I think they are in competition. It's due to be released end of the year as trials have been taken place in secret and results of the trials will be out very soon. Anyway, finally a total cure for tinnitus, not good news for Autifony though!

for me who apply for assisted suicide and he knows it, he know how bad i am, and trying just to survive, but i dont have options and ...

 

[Silvio Sabo]

today i got information from @Danny Boy , it is April fools do you agree it is cruel?

There's a new product coming out soon called norbalt it's basically an improved version of trobalt, which is more precise than trobalt. It's been used on monkey's and been proven to cure tinnitus. It's being developed by GSK by Doctor Charles large Brother, Hans Large. I think they are in competition. It's due to be released end of the year as trials have been taken place in secret and results of the trials will be out very soon. Anyway, finally a total cure for tinnitus, not good news for Autifony though!

for me who apply for assisted suicide and he knows it, he know how bad i am, and trying just to survive, but i dont have options and ...

Yes that is a bit cruel but I have also thought about swallowing the pipe of a shotgun, I think we all have. I would really like at least a relief. I'm not even as gready as to hope for a cure. Just a bit of realief, that's all. Just half the volume and I would be happy.

But you have to hang in there! That's what gets me by. The hope that someday something will happen. I know I'm going to hear silence once again in my life. I know I will! Someday. But not tommorow, not the day after that, not next week, not next month, not next year and probably not even this decade. But someday I will. The research is taking giant leaps and the way things are going with this new generation of kids growing up with Spotify cranked up to maximum volume in their ears all day long. There is going to be plenty more peaople suffering in the future and finding a cure will be that much more desired by the community as a whole.

Also there are succes stories. I live in Gothenburg, same as you. Yesterday I went to pick up my cast made earplugs. And the lady that runs the store used to be an audiologist but is now retired. She told me she had a patient once that had really bad tinnitus for 30 years and one morning when he woke up it was gone! Just gone! He accually got depressed becouse of it. He had his tinnitus for so long that it became a part of him and he just didn't know how to cope now that it was gone. I shure would like to feel bad for that kind of reason instead of this.

Hang in there buddy. Somday it won't be an Aprils fool joke...

 

[Martin69]

@Christian78
Hey Christian.
Where do you have the information about Norbalt from?
Applied for assisted suicide? I have also T above 15 kHz screaming in my head.
You found out yourself that Retigabine works. Why not waiting for a drug that lowers our T?
I know how hard it is, every fu... single day. But you have still many years to live. And one day, there is silence again.

 

[Danny Boy]

today i got information from @Danny Boy , it is April fools do you agree it is cruel?

There's a new product coming out soon called norbalt it's basically an improved version of trobalt, which is more precise than trobalt. It's been used on monkey's and been proven to cure tinnitus. It's being developed by GSK by Doctor Charles large Brother, Hans Large. I think they are in competition. It's due to be released end of the year as trials have been taken place in secret and results of the trials will be out very soon. Anyway, finally a total cure for tinnitus, not good news for Autifony though!

for me who apply for assisted suicide and he knows it, he know how bad i am, and trying just to survive, but i dont have options and ...

I know it was in bad taste...Only realised till after I said it, I am a fool, wish I could go back in time and take it back...I honestly didn't believe anyone would believe it, as it is the 1st of April. Anyway, what bothers me the most is why aren't GSK or any of the big pharmaceuticals companies developing their own cures? There's so many drugs for other conditions, but tinnitus? Nah, we don't care...We don't care about making more money, just doesn't make sense...Bill Gates has billions of pounds and even just a few million and we could cure tinnitus. It's pathetic!

 

[jimH]

@Danny Boy ..What really counts is that you weren't intentionally being cruel. So, you're not a fool. You just momentarily forgot that some people here are hanging on by their finger nails. You just had what I refer to as a "cerebral misfire."...

I know that I've written a few dumb-ass posts that I wish I never had...

 

[Danny Boy]

@Danny Boy ..What really counts is that you weren't intentionally being cruel. So, you're not a fool. You just momentarily forgot that some people here are hanging on by their finger nails. You just had what I call a "cerebral misfire."...

I know that I've written a few dumb-ass posts that I wish I never had...

I know, it was a big mistake and I won't be doing that ever again, I can assure you!

 

[Martin69]

@Danny Boy
Yes, it is 1st April, but this was a bad idea.
We all live in hope...
Keep us informed about your Trobalt and Cats Claw experiment.

 

[Danny Boy]

@Danny Boy
Yes, it is 1st April, but this was a bad idea.
We all live in hope...

I know, biggest mistake ever! Thankfully, it was taken down within minutes, so that's good. Anyway, all hope depends on Autifony.