Retigabine (Trobalt, Potiga) — General Discussion

[dan]

Warning!

• This medicine may colour your urine. This is harmless.
• This medicine may cause dizziness, sleepiness and double or blurred vision, particularly when starting treatment or after dose increases. This means the medicine may reduce your ability to drive or operate machinery safely. Do not drive or operate machinery until you know how this medicine affects you and you are sure it won't affect your performance. Drinking alcohol while taking this medicine can make your vision blurred.
• This medicine can sometimes cause pain or difficulty passing urine, or not being able to urinate at all (urinary retention). This is most likely in the first eight weeks of taking this medicine. You should tell your doctor straight away if you experience any of these problems.
• This medicine can cause mental health problems such as confusion, psychotic disorders and hallucinations in some people. These problems generally tend to happen in the first eight weeks of taking this medicine if they are going to occur. You should consult your doctor if you think this medicine is affecting you in this way.
• There may be a small increased risk of depression, suicidal thoughts and behaviour in people taking antiepileptic medicines such as retigabine for any condition. For this reason, it is very important to seek medical advice if you or someone else taking this medicine, experience any changes in mood, distressing thoughts, or feelings about suicide or self-harm at any point while taking this medicine. For more information speak to your doctor or pharmacist.
• Some people taking this medicine for long periods of time have experienced discolouration of the tissues in the eyes, including the retina. In some cases this was linked with problems with vision. You will need to have an eye examination before starting treatment and every six months while you are taking this medicine to make sure it is not affecting your eyes. Tell your doctor if you notice any changes in your eyes or vision while you are taking this medicine.
• Long-term use of the medicine has also caused a blue/grey discolouration of the skin, lips or nails in some people. You should let your doctor know straight away if you notice anything like this.

Use with caution in

• People over 65 years old.
• People with moderate to severely decreased liver function.
• People with moderate to severely decreased kidney function.
• People who have problems passing urine, for example due to an enlarged prostate gland. (This medicine can make these problems worse, particularly in the first eight weeks of treatment.)
• People with congestive heart failure.
• People with poor functioning of lower chambers of the heart (ventricular dysfunction).
• People with low levels of potassium in their blood (hypokalaemia).
• People with low levels of magnesium in their blood (hypomagnesaemia).
• People with a personal or family history of an abnormal heart rhythm seen on a heart monitoring trace (ECG) as a 'prolonged QT interval'.
• People taking medicines that can cause a prolonged QT interval on an ECG (see end of factsheet for examples).

 

[MattK]

• Long-term use of the medicine has also caused a blue/grey discolouration of the skin, lips or nails in some people. You should let your doctor know straight away if you notice anything like this.

Man, that is quite a list of effects... and if nothing else, it can make you look like a zombie! No thanks!

 

[john2012]

nearly every prescription drug i've taken has an endless list of potentially nasty side effects,
it all depends how desperate you are...some are lucky if they can take it or leave it.
anyway the blue side effect is i believe very high dose long term, not too relevant,
and IMO a small price to pay.

btw, this thread is about to hit 100 pages!
we really need more positive results from chronic T cases

 

[jazz]

I do not want to bring anyone down but I think its highly unlikely that T will just one day go away .

After a 18 months, I also agree it probably won't (ever) go away. Some brains are unable ignore the tinnitus signal--regardless of how many "happy thoughts" we have in an effort to disabuse our autonomic nervous system from its relentless "flight-or-fight" response.

Good luck @RaZaH!

May your side effects be mild and your silence be great!!

Of course, I also wish this for all our trial participants!

(BTW, please I hope no one is drinking on this drug; it enhances alcohol's effects and is not recommended.)

 

[RaZaH]

I realize that its not very optimistic of me , but I do believe that to be the fact of the matter.

Thanks @jazz and everyone , let´s hope this is a way out.

To be honest , I would rather live life a T free smurf , then a T suffering former musician with a studio tan.

 

[Juan Carlos]

That's good to hear @Johno , hope you get lasting results.

I just found a nice article on Retigabine and urinary safety, I thought I might share:
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2012.03441.x/pdf
Hopefully it hasn't been posted before

very interesting, thanks

as for me, im less concerned about that, because, even that I totally have the urine retentino side effect, now i recovered the "i have to pee" feeling, and I have learned how to pee whenever i want: i sit, i need some time (5min) and make some effort in some muscles like when you are trying to pee very far, that with any fullness of bladder, then with totally full bladder is very easy but is not recommanded to let it go top-full

 

[john2012]

@RaZaH, take strength
just imagine you take the trobalt at a sufficient strength
and your tinnitus disappears forever
wow...that's the dream we all want
and it won't happen without trying
good luck from all of us

 

[attheedgeofscience]

(BTW, please I hope no one is drinking on this drug; it enhances alcohol's effects and is not recommended.)

I conveniently decided to ignore that while doing Flupirtine.

(Probably why it didn't work... )

 

[OnceUponaTime]

To be honest , I would rather live life a T free smurf , then a T suffering former musician with a studio tan

LOL... your new avatar!

 

[1MW]

The effects of retigabine to tinnitus are transient like benzos or permanent ?
If you take it it lowers the tinnitus when you have the drug in your body
or have seen someone permanent effect after taking it for some time and then stopping it ?

 

[nogood]

Anyone knows list of countries
Retigabine is available

 

[SoulStation]

The effects of retigabine to tinnitus are transient like benzos or permanent ?
If you take it it lowers the tinnitus when you have the drug in your body
or have seen someone permanent effect after taking it for some time and then stopping it ?

Read the thread.

 

[Philemon]

Hi everyone

I just posted a progress report … Retigabine has a good effect and has significantly reduced my T but still with a bit of up and down … but anyway I have experienced several entire days of near silence (T loudness = 0.5, today is more around 1) which i never experienced since my T started …

Now i'm wondering if staying at 300 mg TID will still slowly improve the situation or if i should jump up right now to 400 mg TID (as i seem to tolerate the drug very well for now) … i'm still concerned about this homeostasis assumption that @locoyeti and @Zimichael talked about 30 pages ago (!), meaning that if 300mg TID doesn't give any further improvements of my T during the next couple of weeks or so, i would maybe jump to 400 mg TID too late and i then would have missed the (speculative) occasion to shut down completely (at least temporary) my T

Any insights ?

another point : i'm sorry not to contribute more to this thread and to the board in general, but i'm quite busy right now with many things. hope i can contribute more during next weeks
All the best

 

[Zimichael]

Philemon... First up, great job on the updates. They are informative and clear. Don't worry about posting too much here on the main thread compared to the Progress Reports. Hell, you have a life to lead too, and one where the T is getting positively affected so far, which is great!

OK, this homeostasis assumption.

Firstly, it's an "assumption". That means no one really has a clue in this situation whether it is valid or not. However, there is some logic behind the concept as all you have to do is look at GABA and Benzos, and they can start to punk out pretty quick with some people (me for instance), and to get same effect have to keep upping the dose. Etc., etc.
So, the "fear" here with Retigabine, is that the brain is so damn smart and wiley (Uhhh...I just remembered English is probably not your first language, sorry...maybe "sournois"?) that it will be resistant to change - like us humans ...of which we are pretty heavily our brains anyway right! Hence, if it gets hit with Retigabine for too long it may find ways to "ignore" it more effectively, and go back to the same old story. Same old T groove firing patterns it has been getting attached to despite their annoyance to "us". Now I am simplifying here of course, but that's the idea as I see it anyhow.

Locoyeti is more involved and knowledgeable about this particular concern than I am, so my position is more one of: "Yes, I understand the possibility, but only time and a much bigger N sample plus controlled trial will tell".*[Loco... feel free to baste my explanations!]

The hope has always been (and Benryu was hot on this) that the brain will realize that these "tinnitus firing patterns" are actually an abnormal situation and a pain the arse/head, so be happy to go back to the proper patterns once we show the rebellious, stuck Kv channels the error of their ways by blasting them with Retigabine. With Matt - Mpt this seems to have been the case. And indeed once the channels presumably "re-set" he could dump the drug and go his merry way and even expose himself to pretty loud seeming sound situations like an ice hockey match, or whatever.

For you, I would just play it a step at a time and not try and push it too hard without just cause. You are at a good dose of 900 mg/day total. Maybe more time on that dose is sufficient and will induce more changes and reduction in your tinnitus over some weeks. Or maybe it would be more effective at 1200 mg/day total, as indeed, the best and most updated research I have seen to date emphatically shows that dose is king. The more you have the bigger the effect...but remember, that was on "neural spike and burst activity", and we are inferring to Tinnitus from that.
No one has tested this out on tinnitus...except us, right here, right now! And the testing is in its infancy.

Yep, this is the "explorers club" and I'm afraid the best we can often do is intelligent, well read speculation.

Philemon, the only way to know is to try it. If you can handle 1200 mg/day, power to you mate. The side effects at that dose would have blown Lep all the way from Italy to Crimea and then he would be in deep doo-doo. If you can tolerate 1200 mg it may be worth a short test run to see what happens...The choice is entirely yours. But my inexpert advice (I am not a doctor), is back off fast if you get worried and things get scary. Dropping back 300 mg a day in one jump at the doses you are on is I think a bit different from suddenly dropping from 300 mg to full zero. You will still have plenty of Trobalt running around in your brain to hopefully satisfy the new levels you have been adapting to.

Good luck, and for sure, all the very best... Zimichael

 

[Philemon]

@Zimichael you really are a gentleman, thanks a lot for your quick and very detailed reply which is a very good summary of our discussion about dosage and homeostasis assumption coupled with very good advises, I really appreciate. I'll still think about it and keep you posted about what i'll do in the next days
All the very best, Philemon

P.S. : "sournois" means something like 'sly' or 'sneaky', i guess it fits with the meaning of 'wiley' ;-) ??

 

[Christian78]

Anyone with T caused by Acoustic Trauma who's tried retigabine? Did you get any positive effects?

I got positive results.

 

[Christian78]

Last 6 days are terrible, day before yesterday i had strongest t during last 3,5 months on retigabine, today i mights say it is almost matching low level t during days before tinnitus

 

[Rube]

The effects of retigabine to tinnitus are transient like benzos or permanent ?
If you take it it lowers the tinnitus when you have the drug in your body
or have seen someone permanent effect after taking it for some time and then stopping it ?

Only 1 person @Mpt had lasting relief after stopping retigabine.

 

[Danny Boy]

Hey, guys/gals! I just thought I'd keep y'all updated! Anyway, I'm on 200mg x 3 now, the tinnitus did raise initially when increasing the dose, but has now gone lower than before, I was on 100mgx 3. My sound-sensitivity has diminished to the point where sounds are no longer a problem, before they hurt, so I had to stay away from loud TV's etc...But now, it's all ok and I feel like myself again. Anyway, this stuff really does work and I haven't had many side-effects I don't feel drunk or forgetful at all, but it differs person-to-person. Anyway, there is something which can cure tinnitus and that my friends is trobalt! Team trobalt f****k yeah!

 

[Rube]

Hey, guys/gals! I just thought I'd keep y'all updated! Anyway, I'm on 200mg x 3 now, the tinnitus did raise initially when increasing the dose, but has now gone lower than before, I was on 100mgx 3. My sound-sensitivity has diminished to the point where sounds are no longer a problem, before they hurt, so I had to stay away from loud TV's etc...But now, it's all ok and I feel like myself again. Anyway, this stuff really does work and I haven't had many side-effects I don't feel drunk or forgetful at all, but it differs person-to-person. Anyway, there is something which can cure tinnitus and that my friends is trobalt! Team trobalt f****k yeah!

excellent news! What are your plans with the dosing, are you maxing at this dose and then tapering down as you run out. If so, How long can you stay at this dose?
You mentioned you had blurry vision, is that still the case ? Thanks !

 

[Danny Boy]

excellent news! What are your plans with the dosing? Are you maxing at this dose and then tapering down as you run out? How long can you stay at this dose?
You mentioned you had blurry vision, is that still the case ? Thanks !

My vision if fine now, just a temporary side-effect. And I plan on going to 300mg x3.

 

[SoulStation]

Anyway, there is something which can cure tinnitus and that my friends is trobalt!

Danny I am SO glad you have got relief from Trobalt but I think under the circumstances of this "trial" or what ever you want to call it I think nobody should be making statements about "cures" until we see another member (or even better yet members) get lasting relief after getting off of this medicine. I think given how far we are along the "Trobalt road" we can say this is a treatment that helps you manage your tinnitus if taken daily (not knocking it just think it's good to clarify). To me the word cure means permanent.
P.S.
I'm also not saying that this isn't going to "cure" you. In fact I REALLY hope it does because that would spur so much hope for T sufferers.

 

[Danny Boy]

Danny I am SO glad you have got relief from Trobalt but I think under the circumstances of this "trial" or what ever you want to call it I think nobody should be making statements about "cures" until we see another member (or even better yet members) get lasting relief after getting off of this medicine. I think given how far we are along the "Trobalt road" we can say this is a treatment that helps you manage your tinnitus if taken daily (not knocking it just think it's good to clarify). To me the word cure means permanent.
P.S.
I'm also not saying that this isn't going to "cure" you. In fact I REALLY hope it does because that would spur so much hope for T sufferers.

Thanks Soulstation...It's the closest thing to a cure, that we have though.

 

[valeri]

It's really good to hear more positive results!
But the question remains if the results will be permanent?
Fingers crossed

 

[RaZaH]

Yes indeed , that is the big question.

 

[Juan Carlos]

hi, i just too 200mg now in my job and it hit me hard, felt dizzier than other times. meanwhile i was taking a bit of chocolate, and before had a decaf cofee. Anybody knows if take with some sweet will make it be absorved faster? now getting better few minutes later

 

[Christian78]

Hey, guys/gals! I just thought I'd keep y'all updated! Anyway, I'm on 200mg x 3 now, the tinnitus did raise initially when increasing the dose, but has now gone lower than before, I was on 100mgx 3. My sound-sensitivity has diminished to the point where sounds are no longer a problem, before they hurt, so I had to stay away from loud TV's etc...But now, it's all ok and I feel like myself again. Anyway, this stuff really does work and I haven't had many side-effects I don't feel drunk or forgetful at all, but it differs person-to-person. Anyway, there is something which can cure tinnitus and that my friends is trobalt! Team trobalt f****k yeah!

Dear I had same experience when i was on trobalt 200 for 1 month then t came back and i went on 300 then i was overly drugged and t came back after some time. TROBALT IS NOT CURE!!!.

Trobalt helps symptoms of tinnitus, but trobalt dont cure tinnitus, you will have tinnitus permanently. People who have chance to get permanently loss of T are those who are not chronic t sufferers (less than 6 months).

My tinnitus now on 300 mg is reaching point before using Trobalt, and then it comes down, I dont know why. When I use 300mg i get drugged and i have sound in ear but i am drugged so i dont pay attention to it, and also it is lower, but IT IS ALWAYS THERE!!! @Danny Boy

How many of us use trobalt? Only one got cured, or he will get it back after exposure to next sound incident but extremely more?!?

It is not fair to say trobalt is cure. Many people will not be able to bare side effects of trobalt long, and as trobalt does not cure you, therefore there is time limit before you get permanent side effects. Lets everyone try trobalt and see can they work or drive car with trobalt. How many days will person who drive a car survive on 300 mg trobalt. I know @locoyeti can say what he thinks of 300 mg and medicine that shuts down brain and therefore you lose balance, possibility to write, speak, pee, muscle relax, hands trembles remember things... You definitely get brain shut down in certain %

I have now T quite bad but I dont want to complain I try to survive, 3 days ago i had it 7-8/10. YEAH GO TROBALT @Danny Boy , trobalt id f**** cure. I will get cured in in limburg month next year.

(limburg month does not exist)

do you care to comment or say final effect + side effect of Trobalt in short comment, please:
@Juan Carlos
@undecided
@Johno
@Ricardo
@RaZaH
@SoulStation

Thank you...

I read my post so i must add that people on 200 mg side effect go away quite a lot but 250-300 are killer bad

 

[Juan Carlos]

Dear I had same experience when i was on trobalt 200 for 1 month then t came back and i went on 300 then i was overly drugged and t came back after some time. TROBALT IS NOT CURE!!!.

Trobalt helps symptoms of tinnitus, but trobalt dont cure tinnitus, you will have tinnitus permanently. People who have chance to get permanently loss of T are those who are not chronic t sufferers (less than 6 months).

My tinnitus now on 300 mg is reaching point before using Trobalt, and then it comes down, I dont know why. When I use 300mg i get drugged and i have sound in ear but i am drugged so i dont pay attention to it, and also it is lower, but IT IS ALWAYS THERE!!! @Danny Boy

How many of us use trobalt? Only one got cured, or he will get it back after exposure to next sound incident but extremely more?!?

It is not fair to say trobalt is cure. Many people will not be able to bare side effects of trobalt long, and as trobalt does not cure you, therefore there is time limit before you get permanent side effects. Lets everyone try trobalt and see can they work or drive car with trobalt. How many days will person who drive a car survive on 300 mg trobalt. I know @locoyeti can say what he thinks of 300 mg and medicine that shuts down brain and therefore you lose balance, possibility to write, speak, pee, muscle relax, hands trembles remember things... You definitely get brain shut down in certain %

I have now T quite bad but I dont want to complain I try to survive, 3 days ago i had it 7-8/10. YEAH GO TROBALT @Danny Boy , trobalt id f**** cure. I will get cured in in limburg month next year.

(limburg month does not exist)

do you care to comment or say final effect + side effect of Trobalt in short comment, please:
@Juan Carlos
@undecided
@Johno
@Ricardo
@RaZaH
@SoulStation

Thank you...

I read my post so i must add that people on 200 mg side effect go away quite a lot but 250-300 are killer bad

Im really sorry for that, as we stated many times before: We still cannot affirm anything about if Trobalt is a prermanent cure or not. In my opinion, it very depends on the age of the Tinnitus, being 6-9 months more likely to cure. Or probably, the longer T have been present, the longer 'keep in silence with trobalt' must stay, but there come the problems of taking Trobalt on long - term , so for those maybe would be better to wait for Aut63

I belive, if MPT wouldn't have taken Trobalt, he will still have T.
For sure Trobalt won't cure everybody, specially if the cause is still present

About the side effects, we cannot generlize also: locoyeti, philemon, mpt and some others are doing quite well at 300 TID, danny and me still cannot say but handle 200 very good. As i said its a russian roulette

For everybody, I think it worths to try (im doing it and im very happy about balance of benefits), but I would never stay more than 6 months on this. After 3 years comes the unwanted permanent side effects

 

[lapidus]

I still believe there are two main factors judging the outcome of Trobalt.

1. The timeframe of T
2. It's a shotgun approach so that it is working for some but not for others is just plain luck/bad luck.

 

[RaZaH]

I have never really understood why there should be a difference between curing long term T as opposed to short term? My friend had T for 3 years and then..boom, went away . Besides how would you come to that conclusion ?
Yes , plasticity of brain , whatever . Still makes no sense to me. Seems to be just a theory.