Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

hi carlos
how long you are going to take this medicine (trobalt)? knowing that the side effects are started to appear on you as you have mentioned (eye floaters).

No man, you didn't get me

I ALWAYS HAD EYE FLOATERS, but i dont see them if i dont look for them ( because im habituated) But on highness (only) I see them instantly because all kind of habituations at "switched off"

for your question, total maximum 4 months i think

 

[preslys]

No man, you didn't get me

I ALWAYS HAD EYE FLOATERS, but i dont see them if i dont look for them ( because im habituated) But on highness (only) I see them instantly because all kind of habituations at "switched off"

for your question, total maximum 4 months i think

am glad that you have no side effect.
but after 4 months what will you take ? as you know Autifony will not be available on 4 months

 

[Nick the Swede]

To bring some new light and perspective to this regarding if it´s all perception or not i decided to run a little project on my own. Instead of Retigabine i will use whisky. I didn´t want to spam the other thread so i will update in here.

Gender
Male

Age
42

Starting date
28/12 2014

Current dose
8 shots a 4 cls 3 times/day, i will move up to 8 shots a 6cls in a week and planning to stay on that dosage for a month.

Current side effects
Minor urination hesitation, probably due to dehydration i think. Amnesia at times, brainfog direct after the dose. Spontaneus vomiting, mostly after the morning dose since i take it on empty stomach. Hard times having conversations, at least longer ones. Really troublesome to drive my car, in heavy traffic i need to concentrate big time. Bad breath at times, snoring according to my fiance.

Changes in tinnitus
None this far, but to early to tell and i think i will have the real effect when moving up in dosage.

Other medications and supplements
3-6 beers in the evening and some random vodka shots when needed.

Happy new year everybody and wish me well on this journey

 

[vasil]

@Nick the Swede
This actually helps me alot. The problem is that i cant use it every day

 

[1MW]

I think trobalt is only to temporary relief NO permanent cure.
I also think that at the end of trip the things will be worse permanent worsening...
I will stay away from that because last 3 days iam taking only worsening only the forst 2 hours is better but no 0db.
Previously i had time with 0db undruged now only druged i have only lowering no more 0db.
I will go for antibiotics + corticosteroids + slowly tapering benzos who knows maybe iam lucky this year...

 

[Guido Galasso]

hello my name is Guido father of 21 girl (Francesca) with tinnitus. To whoever knows it: I would like to know 1) since when the (really very well done) synoptic summary of safety/efficay results on experiences with retigabine has been updated and 2) how is it possible that we are talking of the same drug if there are two different active ingredients (no problem with different trade names)? Thank you and sorry for my english, it's not my mother anguage. Thank you very much. Guido

 

[attheedgeofscience]

I would like to know 1) since when the (really very well done) synoptic summary of safety/efficay results on experiences with retigabine has been updated

There is no official efficacy results of Trobalt (in humans) in relation to tinnitus (because Trobalt is geared towards epilepsy, not tinnitus). There is therefore only 1) theoretical evidence that it may work, 2) anecdotal evidence from eg. random observations such as the people contributing on this board.

You can find an informal review of efficacy via this thread:

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896/page-5#post-82727

I should mention that the review is informal and not signed-off by any doctor or medical authority; it is purely anecdotal evidence.

The general safety profile of Trobalt can be found on the Internet (via official homepages eg. GSK).

2) how is it possible that we are talking of the same drug if there are two different active ingredients (no problem with different trade names)?

I am not sure I understand your question. Trobalt and Retigabine is the same product (with different tradenames in Europe and the USA).

 

[luigilo]

Hello! I read everydays this thread since September. I wanted to thank you all,for the hope that you gave me . Thank you @Christian78 , @Danny Boy @jazz , @attheedgeofscience @Juan Carlos Carlos @undecided , @SoulStation @Zimichael and all other of the famous team Trobalt .

I bring you some news from France , one member of a French tinnitus forum is taking Trobalt since 1 month . 200x3 daily. Today his tinnitus ( accoustic trauma) is 1/10 before it was 8 or 9/10. His doctor advised him to take a break with the Trobal for 1 month every 3 months to keep the profits and do not get tolerance .

Have a nice evening, Thank you for the hope you give us every day .

 

[sticky]

Hello! I read everydays this thread since September. I wanted to thank you all,for the hope that you gave me . Thank you @Christian78 , @Danny Boy @jazz , @attheedgeofscience @Juan Carlos Carlos @undecided , @SoulStation @Zimichael and all other of the famous team Trobalt .

I bring you some news from France , one member of a French tinnitus forum is taking Trobalt since 1 month . 200x3 daily. Today his tinnitus ( accoustic trauma) is 1/10 before it was 8 or 9/10. His doctor advised him to take a break with the Trobal for 1 month every 3 months to keep the profits and do not get tolerance .

Have a nice evening, Thank you for the hope you give us every day .

Good news, another positive for Trobalt

 

[rtwombly]

His doctor advised him to take a break with the Trobal for 1 month every 3 months to keep the profits and do not get tolerance .

Now THAT is very interesting and helpful. Retigabine is definitely still helping me at 900mg (and the side effects are present - typing this is like trying to balance on a skateboard for the first time), but it has eased up in efficacy a bit from previously.

Can you please ask that poster the following questions?

1. At what dosage did he first experience relief from his tinnitus?
2. What side effects has he experienced, starting with what dosage and how severe are they now?
3. How is he planning to reduce his dosage in order to take a break?

Number 3 is most important to me. Please let us know if you get a response. If you can, also please quote this post with your response or private message me so I will be sure to see it. Merci beaucoup!

 

[RaZaH]

I do not like drugs and did not go further then a 100mg tablet occasionally.
HAvent touched it for probably a month.
Had a super bad day today , took one 100mg and I have 99% silence.
I have always been super sensitive to drugs and thats why I dont like them.
100mg really seems to nuke my T, at least for a while.

 

[Champ]

I do not like drugs and did not go further then a 100mg tablet occasionally.
HAvent touched it for probably a month.
Had a super bad day today , took one 100mg and I have 99% silence.
I have always been super sensitive to drugs and thats why I dont like them.
100mg really seems to nuke my T, at least for a while.

I'm fine with temporary relief. I couldve used some - my day was also rough T wise...

 

[Juan Carlos]

Hi guys, im in barcelona for a holidays, some days i take 400, plus 100x3 on day, some days i take 400+400
Im very good, wich means low, low, improving over time, now a small dose improves, before didnt happened
Now i am able to know what make its louder, like chocolate, before i wasnt able
When im in silent room, like this wich i booked in airbnb with no windows, im with this strange silence wich i dont know how to decribe, before i ate some vinager on salad and appeared that mild pure tone on right ear wich is my previous stage, 400 dose totally makes me this strange silence and even lower doses

About side effects, i have to add i enjoy so much walkin on the streets over here with 100 or 200mg dose
I explained a friend how i feel when high and he said thats like having low latent inhibition, and true, totally matches, please read whats that in wikipedia
Greetings from bcn and 400mg in me

 

[luigilo]

@rtwombly no prob, i do that asap

 

[RaZaH]

That 100mg seems to last about three hours for me.

 

[amandine]

@luigilo

any chance you can post that info that @rtwombly requested publicly on this forum cos there are other people who would really welcome the info too if that would be ok please?

I am also in france by the way ...south west....where are you?

Now THAT is very interesting and helpful. Retigabine is definitely still helping me at 900mg (and the side effects are present - typing this is like trying to balance on a skateboard for the first time), but it has eased up in efficacy a bit from previously.

Can you please ask that poster the following questions?

1. At what dosage did he first experience relief from his tinnitus?
2. What side effects has he experienced, starting with what dosage and how severe are they now?
3. How is he planning to reduce his dosage in order to take a break?

Number 3 is most important to me. Please let us know if you get a response. If you can, also please quote this post with your response or private message me so I will be sure to see it. Merci beaucoup!

 

[nogood]

Found that it is available in india.
Made contact with one of the senior neurologist in india. He said he would not give the medication unless i do direct consultation and do tests since medication has lots of side effects. Which is totally understandable, will be in india next month.
hopefully things will go smooth. Will update once i meet him inperson.

 

[rtwombly]

Quick post to say to @Christian78, @tomm, and anybody else having bad experiences - HUG - hang in there my friends. You have at least seen that your tinnitus is not an immovable rock. It can be shifted around. It doesn't just decide when it wants to move, we can move it. Sometimes it doesn't move like we want it to, sometimes it still seems impossibly heavy, but it can be moved.

All we must wait for is the right lever.

 

[undecided]

Reading locoyeti's user experience entry, I can't help but wonder whether retigabine could actually be used as a sort of aspirin.
I've had a bit of a bad day today and I thought about popping a 300mg pill, however I'm completely off the drug for 20 days, so I chickened out.

 

[tomm]

Reading locoyeti's user experience entry, I can't help but wonder whether retigabine could actually be used as a sort of aspirin.
I've had a bit of a bad day today and I thought about popping a 300mg pill, however I'm completely off the drug for 20 days, so I chickened out.

Interesting you mention that, I've been off retigabine for getting on for a fortnight and had a progressively worse day today to the point where it was screaming when I left work. I came in and immediately ate dinner and afterwards had 200mg to try and get a hold of it.

That was about 2 and a half hours ago - not noticed any decrease. May try 300+ if it gets bad again and report back.

Edit: I had an extra 100mg (total 300mg). Side effects were present but volume or annoyance did not decrease.

 

[Juan Carlos]

Interesting you mention that, I've been off retigabine for getting on for a fortnight and had a progressively worse day today to the point where it was screaming when I left work. I came in and immediately ate dinner and afterwards had 200mg to try and get a hold of it.

That was about 2 and a half hours ago - not noticed any decrease. May try 300+ if it gets bad again and report back.

instead of 200 after eat, take 300 before eat and wait 30 minutes, you will feel a huge difference

I also think it can be taken like aspirin, and i think its safe to take 300mg when you are completely off (my opinion)
im back from holidays, let see how it goes

 

[Juan Carlos]

@locoyeti I also had crazy experiences with 400mg

if i can take 400 with dinner, high, but ok, but then i wake up at 5am or so to take another 400, this time stomach was emptier, but well just went to sleep, i had a crazy dream that made me woke me up, there were like 5 children, i woke up, and when woken up, turned on the light and i was very convinces that thanks to that dream i could predict the future of that children, well that was maximum highness...

but on that moment i was hearing some repetitive sound (like yours), very strange, and also I had Visual Hallucinations with open eyes (for first time), saw some tubes that went throw my jacket. Its like when you wake up from a dream on top-high state, you wake up and I still dream after wake up, (its the 2nd time it happens to me)

So well, that sound, I dont attach to tinnitus, its a sound-hallucination, as same as i had visual hallucination, thats why that doesnt occur to me on 300mg, 400 on empty stomach is totally killer, maybe as my T improves I can reduce the dose to 300 to get silence, because there is no point to take 400 if i get silence with 300, will see how it goes... maybe is good Idea to take that 400 dose mixed with a banana to do more progressive absortion

 

[Viking]

if i can take 400 with dinner, high, but ok, but then i wake up at 5am or so to take another 400, this time stomach was emptier, but well just went to sleep, i had a crazy dream that made me woke me up, there were like 5 children, i woke up, and when woken up, turned on the light and i was very convinces that thanks to that dream i could predict the future of that children, well that was maximum highness...

but on that moment i was hearing some repetitive sound (like yours), very strange, and also I had Visual Hallucinations with open eyes (for first time), saw some tubes that went throw my jacket. Its like when you wake up from a dream on top-high state, you wake up and I still dream after wake up, (its the 2nd time it happens to me)

So well, that sound, I dont attach to tinnitus, its a sound-hallucination, as same as i had visual hallucination, thats why that doesnt occur to me on 300mg, 400 on empty stomach is totally killer, maybe as my T improves I can reduce the dose to 300 to get silence, because there is no point to take 400 if i get silence with 300, will see how it goes... maybe is good Idea to take that 400 dose mixed with a banana to do more progressive absortion

I had a similar experience in August with Trobalt: sleepwalking. One day I tried to get to 600mg, divided into three doses. Late at night, I took my usual 200mg more 1mg of clonazepam. I had a strange dream. I dreamed that I had lost the keys to the motorcycle ... but it did not end there ... I stood up and went into the bathroom to find the keys in the dirty clothes. My parents heard my footsteps and woke up and said that I was talking too but in reality I was sleeping. The next day I did not remember anything. Vivid dreams had become very common since i took 300

 

[locoyeti]

@locoyeti I also had crazy experiences with 400mg

if i can take 400 with dinner, high, but ok, but then i wake up at 5am or so to take another 400, this time stomach was emptier, but well just went to sleep, i had a crazy dream that made me woke me up, there were like 5 children, i woke up, and when woken up, turned on the light and i was very convinces that thanks to that dream i could predict the future of that children, well that was maximum highness...

but on that moment i was hearing some repetitive sound (like yours), very strange, and also I had Visual Hallucinations with open eyes (for first time), saw some tubes that went throw my jacket. Its like when you wake up from a dream on top-high state, you wake up and I still dream after wake up, (its the 2nd time it happens to me)

So well, that sound, I dont attach to tinnitus, its a sound-hallucination, as same as i had visual hallucination, thats why that doesnt occur to me on 300mg, 400 on empty stomach is totally killer, maybe as my T improves I can reduce the dose to 300 to get silence, because there is no point to take 400 if i get silence with 300, will see how it goes... maybe is good Idea to take that 400 dose mixed with a banana to do more progressive absortion

yea 400mg is intense, but my point was that it might be possible that going from 400mg TID to 300mg TID is better than just staying at 300mg TID and never going to 400mgTID. The crazy side effects I had lasted for a week or so, and it was the same at 300mgTID as it was 400mg TID - i guess the mind just adjusts. but coming back down to 300mg TID after 400mg TID, i feel like i have had a lasting improvement. would like to see how others respond.... doesn't seem like many people have been at 400mg TID though.

 

[Hudson]

yea 400mg is intense, but my point was that it might be possible that going from 400mg TID to 300mg TID is better than just staying at 300mg TID and never going to 400mgTID. The crazy side effects I had lasted for a week or so, and it was the same at 300mgTID as it was 400mg TID - i guess the mind just adjusts. but coming back down to 300mg TID after 400mg TID, i feel like i have had a lasting improvement. would like to see how others respond.... doesn't seem like many people have been at 400mg TID though.

So you're experiencing a definite improvement then?

Thanks for taking the time to update us, bud.

 

[undecided]

Interesting you mention that, I've been off retigabine for getting on for a fortnight and had a progressively worse day today to the point where it was screaming when I left work. I came in and immediately ate dinner and afterwards had 200mg to try and get a hold of it.

That was about 2 and a half hours ago - not noticed any decrease. May try 300+ if it gets bad again and report back.

Edit: I had an extra 100mg (total 300mg). Side effects were present but volume or annoyance did not decrease.

My curiosity got the better of me, 20 days after completely stopping retigabine.
Yesterday night, before going to bed, I took a 300mg pill.
15 minutes after taking it, I started getting that nice high feeling that I used to get when I took the regular dosage. 30 minutes after that, my T was down 60-70% - hardly noticeable. Went to bed and slept.

I haven't had any lasting improvements from Trobalt. However, it seems that I could use it as an aspirin.
I don't know if that's encouraging or pointless...

 

[Mark662]

@undecided it is encouraging. Any drug that has any suppression qualities is helpful.
How long would you say it works for?
Do you wake up in the morning after taking it at night and feel it has any residual effect?

 

[Martin69]

My curiosity got the better of me, 20 days after completely stopping retigabine.
Yesterday night, before going to bed, I took a 300mg pill.
15 minutes after taking it, I started getting that nice high feeling that I used to get when I took the regular dosage. 30 minutes after that, my T was down 60-70% - hardly noticeable. Went to bed and slept.

I haven't had any lasting improvements from Trobalt. However, it seems that I could use it as an aspirin.
I don't know if that's encouraging or pointless...

Seems that some members here report this. So that after around 45 minutes, T gets silent or much milder. Even if RTG would not cure T, if there is a relief for some hours, this would be helpful. Question would then be, like for every med, how long does this work before becoming addictive? And how much one needs to take (some report here relief with already 100 mg), and of course side effects.

 

[locoyeti]

So you're experiencing a definite improvement then?

Thanks for taking the time to update us, bud.

yea, i'd say that my t has changed. i would have to be off it for a few weeks to really know though. this is all still in the early stages, i think most people need to understand that and not jump to any conclusions just yet.

are you planning on trying this @Hudson?

@undecided , after your two weeks off, did the t go completely back to what it was before your trial? do you have variable t or is there always at least some constant level? your max daily dosage from what i remember was 300mg TID and you were only on that for a week or so right? after your 300mg pill the other night, in the morning did it come back to your normal t level?

since my t is variable, it is hard to answer whether i have permanent change, since there are two dimensions... if i have t or not, and how loud the t is. i feel that i have had improvement in both dimensions. i'll know how much permanent the improvement is in a few weeks.

 

[attheedgeofscience]

since my t is variable, it is hard to answer whether i have permanent change, since there are two dimensions... if i have t or not, and how loud the t is. i feel that i have had improvement in both dimensions. i'll know how much permanent the improvement is in a few weeks.

@locoyeti thanks for taking the time to update the board and your progress form!

Please be kind to continue to update your progress forms (you don't need to write a whole novel each time). Just try to fill out the basic skeleton template as often as you like (ie. even as much as once per day, if you have the time). It would be especially helpful if you could also provide at least one or two updates at one or two weeks post your complete taper down. In that update, please be kind to include your tinnitus intensity level (at that time) and any lasting side-effects that you might have (hopefully none); if any side-effects by that point, please be kind to do another update later on (until the side-effects have ceased). Your testimony on both these aspects is particularly important as you are the first person to reach the 1200mg/day level.

The information being provided by yourself (and others) is being used by researchers. It is quite important.