Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

well you can try 3-5 days... if your tinnitus is nothing so hard then you may give up but you can try 300mg/day
dosage

If you experience side effect then be nice here to come and write in deal how did you feel to be guinea pig because we are, and other just want to hear from us is it safe, never to try by themself

Yeah, I think I'm gonna give up on trobalt. I mean I don't want to go blind.

I did not got blind i just dont see ok any more.

 

[Danny Boy]

well you can try 3-5 days... if your tinnitus is nothing so hard then you may give up but you can try 300mg/day
dosage

If you experience side effect then be nice here to come and write in deal how did you feel to be guinea pig because we are, and other just want to hear from us is it safe, never to try by themself

I don't know after 1 pill it blurred my vision slightly more than it already was...God knows if I took it for even a few more day, I could lose my vision totally. My advice to anyone wanting this stuff, if you want your eyesight in tact, do not take this. And I didn't mind being a guinea pig, as I can now warn others.

I did not got blind i just dont see ok any more.

Exactly...But man, you could go blind...

 

[Christian78]

Yes, and what that if it becomes so terrible i will... do something i dont know, my t is severe and i cant stand it, i rather die that come back under it full power

I don't know after 1 pill it blurred my vision slightly more than it already was...God knows if I took it for even a few more day, I could lose my vision totally. My advice to anyone wanting this stuff, if you want your eyesight in tact, do not take this. And I didn't mind being a guinea pig, as I can now warn others.

well it is simple, stop, wait for 48h, if the vision returns then you know for 80% certainty it is is not permanent.

 

[Danny Boy]

Yes, and what that if it becomes so terrible i will... do something i dont know, my t is severe and i cant stand it, i rather die that come back under it full power



well it is simple, stop, wait for 48h, if the vision returns then you know for 80% certainty it is is not permanent.

I'll try that 48 hour thing. My vision is perfect if I wear my glasses...But what if trobalt makes it even blurry with my glasses? That's dangerous...And I totally understand, I feel hopeless too and I want to die because of this. I really want to take it, but I'm scared because going blind and having tinnitus would be a truer hell.

 

[Christian78]

i did not went blind totally, i can see, my glasses were under 0.95 so i dont need them, but now i do. test, try, see on 3x 100mg a week than go of it
see, after 7 days
becouse pills half every 8h... so

take 3 days 50 mg, and then 4th day when you wake up you will have 50, afternoon 25, evening 12,5, next morning 6, afternoon 3, evening 1,5, and 3 day you will be trobalt free, 3 day on, 3day off and you get to know side effects , and what wanished

i did not got my side effects with eyes spo much directly but they came with timemore and more

 

[Juan Carlos]

Danny and christian, dont be so scared for blurry vision, that's a documented side effect, is not making you blind, in that case this drug wouldn't be on the market, it has been tested for years with doses up to 1200mg for epilepsy.
Nobody reported permanent side effects in the forum, in this document you can read, if blurred vision happens, just dont drive, it doesn't even say "tell to your doctor" or "stop medication"

This medicine may cause dizziness, sleepiness and double or blurred vision, particularly when starting treatment or after dose increases.

this side effect is reported to a 2% of people taking 600mg and 5% taking 1200mg, you are one of the unlucky ones (link)

in this document says what to do when every side effect appears
Feeling dizzy, tired or sleepy Blurred sight or double vision If any of these happen, do not drive or use tools or machines
in 3 of the other side effects says "let your doctor know" but not in the case of blurred vision
Anyways, if I was in your situation, probably I would stop for few days and see everything come back to normality before restarting the treatment just to feel more confident
Finally, I appreciate a lot that you are reporting everything about this drug, I will do the same when I start, thank you very much

 

[Danny Boy]

Danny and christian, dont be so scared for blurry vision, that's a documented side effect, is not making you blind, in that case this drug wouldn't be on the market, it has been tested for years with doses up to 1200mg for epilepsy.
Nobody reported permanent side effects in the forum, in this document you can read, if blurred vision happens, just dont drive, it doesn't even say "tell to your doctor" or "stop medication"

this side effect is reported to a 2% of people taking 600mg and 5% taking 1200mg, you are one of the unlucky ones (link)

in this document says what to do when every side effect appears
Feeling dizzy, tired or sleepy Blurred sight or double vision If any of these happen, do not drive or use tools or machines
in 3 of the other side effects says "let your doctor know" but not in the case of blurred vision
Anyways, if I was in your situation, probably I would stop for few days and see everything come back to normality before restarting the treatment just to feel more confident
Finally, I appreciate a lot that you are reporting everything about this drug, I will do the same when I start, thank you very much

Again, I might be over exaggerating....I mean, I am short-sighted anyway so might just be me being paranoid lol

 

[SoulStation]

Wondering the same as Telis, is it just the perception? Otherwise whisky and Z pills does it as well.

Everything is preception. I we don't hear something then it is not perceived.
On Trobalt I want to bring up a few issues. First the stuff I originally got from Walgreens (Potiga) seems like it worked better then the stuff from blue sky drugs (Trobalt from Canada). I also noticed that the Canadian supply(shipped from London) had an expiration date of 3/2015 but the Walgreens Potiga expired 5/16 which means blue sky drugs is sending old meds that have been sitting on a shelf for potentially years. Any one think this could affect potency ?


The trobalt also seems to make my vision blurry, I don't always say/type what I mean and have short term amnesia.

 

[jazz]

A recent (August, 2014) article on Retigabine and its long-term retention rates is available as a full free text. It doesn't say anything new, but I think it is worth a read, especially noting the type and commonality of Retigabine's side effects:

http://www.ncbi.nlm.nih.gov/pubmed/25175006

Here is an excerpt:

Adverse effects were experienced by 107 people (74%). Twenty-four (17%) reported increase of their seizure frequency or intensity. Somatic side effects were observed in 100 people (69%) after starting RTG, and 17 people (13%) experienced psychiatric side effects.

The most common side effects reported were attributed to the CNS (cognitive slowing, double vision, speech disturbance etc., n = 55, 38%) or nonspecific (fatigue, weight gain; n = 54, 37%). Problems with urination (urinary retention, dysuria, or incontinence) were seen in 13 people (9%), a new skin rash in five (3%), lip discoloration in one, and gastrointestinal problems in five (3%).
​

Because of the drug's potent side effects, it is not viable long term, i.e., for maintenance of tinnitus reduction.

@Mpt what's your status? Please inform! The last update I could find in the other thread is 9.11.14.

Reference:

http://www.seizure-journal.com/article/S1059-1311(14)00229-5/fulltext​

 

[locoyeti]

i have been on 900mg/day for 2 days so far. i have a lot to say but have been busy with other stuff so i will write more later, just wanted to check in and say that there is definitely a profound reduction in my tinnitus on this drug. i am hoping that it will get better and better though, as Mpt said it was really only after a month on the drug that he was T free. its early, but is looks promising. other peoples mileage may vary.

 

[jazz]

there is definitely a profound reduction in my tinnitus on this drug

Excellent news!

 

[RichL]

i have been on 900mg/day for 2 days so far. i have a lot to say but have been busy with other stuff so i will write more later, just wanted to check in and say that there is definitely a profound reduction in my tinnitus on this drug. i am hoping that it will get better and better though, as Mpt said it was really only after a month on the drug that he was T free. its early, but is looks promising. other peoples mileage may vary.

Good stuff bro, That's great news man, go hard!

Again, I might be over exaggerating....I mean, I am short-sighted anyway so might just be me being paranoid lol

I think you might just being a bit paranoid @Danny Boy , I would give it at least a week and see, you might find that the side effects fade a little the longer your on it.
You need to give yourself the best shot you can at this, allot of us can't get Trobolt, although I haven't tried yet, so you are one of the lucky ones.

Whatever you decide bro, plaudits for giving it a go.

Rich

 

[jazz]

. First the stuff I originally got from Walgreens (Potiga) seems like it worked better then the stuff from blue sky drugs (Trobalt from Canada). I also noticed that the Canadian supply(shipped from London) had an expiration date of 3/2015 but the Walgreens Potiga expired 5/16 which means blue sky drugs is sending old meds that have been sitting on a shelf for potentially years. Any one think this could affect potency ?

I wonder if the formulation could be somewhat different? The active ingredient would be the same, but maybe the inactive ingredients (binders) differ. I'm just speculating. But I don't believe it's a potency thing. The second one was well within its expiration date.

Below is the gold standard for drug information--all drugs. I don't believe this link appears in the thread, though much of the same information has been listed numerous times.

http://www.pdr.net/full-prescribing-information?druglabelid=1453#section-16.1​

 

[lapidus]

@Mpt what's your status? Please inform! The last update I could find in the other thread is 9.11.14.

No, Mpt's last update is in this thread, just check his postings on his profile. He is completely off Retigabine and consider himself cured more or less. This is what he said:

"in regards to my current tinnitus after tapering down, I never hear my tinnitus anymore ever under any normal circumstances. It's literally just when plugging my ears to consciously look for it and even then I would say that I don't hear it probably half of the time, and when I do it's extremely faint even with ears plugged. Basically I could have had this level of tinnitus my whole life and I never would have known about it"

 

[Champ]

i have been on 900mg/day for 2 days so far. i have a lot to say but have been busy with other stuff so i will write more later, just wanted to check in and say that there is definitely a profound reduction in my tinnitus on this drug. i am hoping that it will get better and better though, as Mpt said it was really only after a month on the drug that he was T free. its early, but is looks promising. other peoples mileage may vary.

Considering how long you have had it, if you continue to notice improvements, I may be encouraged enough to do this myself.

I have been VERY concerned about the side effects, but I'm young enough (27 going on 28) that I think I could recover from them easily enough. Keep us updated locoyeti.

 

[lapidus]

there is definitely a profound reduction in my tinnitus on this drug.

Wow! A profound reduction eh? Looking forward to your next, more detailed update

 

[locoyeti]

i woke up to something like silence. i had to look at myself in the mirror in the bathroom to realize something was missing. after that realization it is kind of coming back a bit but it is still there but pretty silent. crossing fingers...

it is kind of hard to type while you are feeling the effects of the drug, so my short updates might be brief, i totally understand zmick, the thoughts are in order but you type then on occasion in different order. strange kind of effect.

 

[locoyeti]

Wow! A profound reduction eh? Looking forward to your next, more detailed update

sometime this week.

 

[sticky]

Been away from this forum for a little while, but Loyceti and Dannyboy..........INCREDIBLE

sticky

 

[Christian78]

Did anyone check this Sonosan, i beleave it is just suplement.

I had got last 2 days worse t becouse of one med to kill a pain in kidney and now it is coming back to normal. tomorrow falling to 200+200+250 dosage , lowering for additional 50. today was 700, tomorrow 650. For me first actual change in t came after few days on 600. For now tinnitus is not becoming severely increased. I wish if i could make a light brake with retigabine, to refresh brain after accidental double dosage (well it was 300 and 2,5h later 200 - i was not sure did i took medicine)

never the less i am slowing to see what is happening, with to slow to 0 for a month , and do a restart, (plus save some pills that i could send to a friend)

http://www.sonosan.com/sonosan.html

http://www.sanimamed-shop.com/sonosan/

 

[RaZaH]

Thanks for your updates @Christian78

 

[RaZaH]

@locoyeti , interesting , a profound reduction is exactly what I am looking for

 

[Christian78]

sometime this week.

I want all info now. You demanded it from me. Now complete i demand a4 page, without moment waiting.

 

[NGC891]

Hi,

I have found this. It's could be important to take the pill at the good time for having the best absorption. It also could reduce side effects?

"...Pharmacokinetics
Retigabine when orally administered is rapidly absorbed and has a bioavailability of 60%. Food delays its absorption by 2 hours. It has a Tmax of 1.5 hours and elimination half life of 8 hours..."

http://www.ijpcs.net/uploads/1/0/3/4/10341868/ijpcs-0028-2012.pdf

Did you know?

@Christian78: do you take pills with an empty stomach or with a full stomach?
Have you notice differences?

Thank you very much

 

[Danny Boy]

PHARMACOLOGY

Retigabine acts via a different mechanism of action to other antiepileptics, primarily by opening the neuronal potassium channels KCNQ2 (Kv7.2) and KCNQ3 (Kv7.3). This stabilises the resting membrane potential, thereby suppressing epileptiform firing.

Other mechanisms by which retigabine exerts its anticonvulsant effect have yet to be fully elucidated, but data indicate that the drug may be a GABA enhancer.1,2 At clinically relevant concentrations, retigabine does not alter the activity of the Kv7.1 potassium channel, which plays a key role in cardiac action potential repolarisation.3

As retigabine is not metabolised by cytochrome P450 enzymes, it is thought to have few interactions with other antiepileptics, although clearance of retigabine is increased by carbamazepine and phenytoin.

 

[tomm]

Does anyone know why it might cure T if it doesn't cure epilepsy?

 

[dan]

Does anyone know why it might cure T if it doesn't cure epilepsy?

We don't know that it cures T yet.

 

[SoulStation]

I wonder if the formulation could be somewhat different? The active ingredient would be the same, but maybe the inactive ingredients (binders) differ. I'm just speculating. But I don't believe it's a potency thing. The second one was well within its expiration date.

Below is the gold standard for drug information--all drugs. I don't believe this link appears in the thread, though much of the same information has been listed numerous times.

http://www.pdr.net/full-prescribing-information?druglabelid=1453#section-16.1​

Having taken both the US and European forms of this drug I can say in my totally honest opinion that there is a notable difference in the side effects and the affect on subjective T.

 

[jazz]

Having taken both the US and European forms of this drug I can say in my totally honest opinion that there is a notable difference in the side effects and the affect on subjective T.

I believe you! And you've given this thread very important information. People in the US should stick with the US version of Retigabine. This probably won't be an option in other countries. If @Zimichael had tried the US product, perhaps his results would've been different.

@Mpt and @locoyeti also took/currently taking the US version, I believe.

 

[dan]

The US drug is very prohibitive in cost. It's like $1000 for a
300mg 90 pill box.