Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
MemberOk, got some news. Oddly put, the H returned last night and was horrible to the point where noises were amplified and too loud, but then, I took a trobalt tablet and it went. So in-between doses this happened...I think MPT was just lucky and trobalt is a dreamers drug.
undecided
Member
I've been off Trobalt for a couple of weeks, tapered off slowly.
Didn't do much for me, at the end... Just some happy powder as a member described it.
A notable problem: All the side effects slowly disappeared after discontinuation - except one weird thing.
Since I quit, I haven't really been feeling any urge to pee. Obviously, I go about that business 2-3 times a day but only because I feel that I should.
Fortunately, the peeing feeling has been coming back slowly (lol) but I was kinda worried for the past 10 days.
I think Trobat fucked up my peeing potassium channels and did jack for the ones at the brain. Great success
Didn't do much for me, at the end... Just some happy powder as a member described it.
A notable problem: All the side effects slowly disappeared after discontinuation - except one weird thing.
Since I quit, I haven't really been feeling any urge to pee. Obviously, I go about that business 2-3 times a day but only because I feel that I should.
Fortunately, the peeing feeling has been coming back slowly (lol) but I was kinda worried for the past 10 days.
I think Trobat fucked up my peeing potassium channels and did jack for the ones at the brain. Great success
So this RTG is not a good drug for T - after all this it simply is causing more problems than solving them. Have any other users on this got anything to add to this please.....is there agreement by other users re this or do you other users say that it is working for you.......please can we have some comments re this please...
i'm tapering down, i'm at 900mg tid for the last 5 days. side effects, particularly cognitive ones, are drastically reduced, so i can work just fine, and type just fine. the volume is still very low, i don't have any h, and have not had any significant spikes for the last 2-3 weeks. i think i can say that i've had good results with the drug. i think its important to not monitor your t while you are on the drug. if i had to do this all over again, i would have done whatever i could to just go about my day as if nothing was happening. i feel as this drug may be an important tool for habituation, which @Mpt has admitted in another thread may be the ultimate cause of his relief. i hope things don't get worse when i am completely off of it in two weeks. as weird as it may sound, i think a fundamental indifference to the outcome may counterintuitively yield better results. as i am tapering off now, i feel this has been an enlightening experience - i did not get complete cessation but i feel as though i learned exactly what my t is, and i am no longer afraid of it. this may sound a bit zen, but that is how i am currently feeling about it.
Hi guys, I can identify the next stages of my T:
So now, im always on the stage 3, with no RTG in my blood, i consider that a consistent improvement, i can skip a dose and still is like that
about stage 4: its a strange silence. I had this feeling Before my Tinnitus appeared, for example after a party night and drinking night when i got home and lie at bed, its silence but a feeling like everything is moving in your head, i get this feeling with 400mg dose and empty stomach
last nights I had a crazy experience when taking 400mg, one night I had a kind of nightmare on wich I couldn't scape, i would explain but its so dificult and nonsense, so will i finally could scape from that nightmare and open my eyes and turn on the light, so AFTER that that repeating-nightmare was still present, fade away in one minute but that was kind of the most crazy experience.
the other rare experience with 400mg dose I did explain in my post
https://www.tinnitustalk.com/thread...iga-—-user-experiences.6047/page-4#post-85521
Another side effect i never told: I start dreaming BEFORE i fall completely asleep, is not a nice feeling, i start seeing all kind and random staff when im still conscious
I am going to skip morning dose, and increase night dose because I think the brain must be very relaxed to maximize the effect of retigabine. On daytime we are all time hearing sounds so the neurons are not able to relax. 400mg make me feel silence so thats what i gonna take before sleep. I think that will be good to avoid tolerance creation and other side effects
H is totally gone, i hope it does not come back like christian and dany
so, Im not still totally sure, but i think i will take 400 at 11pm and then add 200 at 5am. That will be a total of 600, wich i think is a good dose.
Maybe keeping RTG all time in blood is what causes tolerance, keep days clean may help on that way and others. I am not using RTG for personal relief but hoping for a permanent cure or partial improvement, honestly if I stay like now (stage 3) forever i will consider my case a total success and will be so happy with it
- Initial T: hissing plus tone 4100 in both ears (no RTG)
- Same as 1 but lower volume (200mg dose)
- pure tone on right ear, nothing else (300mg dose)
- something similar to total silence, strange feeling (400mg dose)
- Total silence (year <=2013 when not drunk after party)
So now, im always on the stage 3, with no RTG in my blood, i consider that a consistent improvement, i can skip a dose and still is like that
about stage 4: its a strange silence. I had this feeling Before my Tinnitus appeared, for example after a party night and drinking night when i got home and lie at bed, its silence but a feeling like everything is moving in your head, i get this feeling with 400mg dose and empty stomach
last nights I had a crazy experience when taking 400mg, one night I had a kind of nightmare on wich I couldn't scape, i would explain but its so dificult and nonsense, so will i finally could scape from that nightmare and open my eyes and turn on the light, so AFTER that that repeating-nightmare was still present, fade away in one minute but that was kind of the most crazy experience.
the other rare experience with 400mg dose I did explain in my post
https://www.tinnitustalk.com/thread...iga-—-user-experiences.6047/page-4#post-85521
Another side effect i never told: I start dreaming BEFORE i fall completely asleep, is not a nice feeling, i start seeing all kind and random staff when im still conscious
I am going to skip morning dose, and increase night dose because I think the brain must be very relaxed to maximize the effect of retigabine. On daytime we are all time hearing sounds so the neurons are not able to relax. 400mg make me feel silence so thats what i gonna take before sleep. I think that will be good to avoid tolerance creation and other side effects
H is totally gone, i hope it does not come back like christian and dany
so, Im not still totally sure, but i think i will take 400 at 11pm and then add 200 at 5am. That will be a total of 600, wich i think is a good dose.
Maybe keeping RTG all time in blood is what causes tolerance, keep days clean may help on that way and others. I am not using RTG for personal relief but hoping for a permanent cure or partial improvement, honestly if I stay like now (stage 3) forever i will consider my case a total success and will be so happy with it
- Dec 24, 2013
- 933
- Tinnitus Since
- (1956) > 1980 > 2006 > 2012 > (2015)
- Cause of Tinnitus
- Ac. Trauma & Ac.Trauma + Meds.
Thanks @Juan Carlos ...for your vivid and detailed descriptions. I wish all would do same as it would help to get a better understanding of the drug.
In short, as I said quite a while ago, effects and results are all over the map...and "variability is here to stay". Which is to no great surprise seeing as we have no pre-screening (just look at Autifony's 'denial of access' list to their trial!), a small N sample, and the only "control" we have for the drug and trialees, is simply...being able to get it!!!
Take care J C, and again...thank you! Zimichael
In short, as I said quite a while ago, effects and results are all over the map...and "variability is here to stay". Which is to no great surprise seeing as we have no pre-screening (just look at Autifony's 'denial of access' list to their trial!), a small N sample, and the only "control" we have for the drug and trialees, is simply...being able to get it!!!
Take care J C, and again...thank you! Zimichael
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I had same effect like you, i missed 2 dosages one day, slept over at friend and there was no t, but after i was taking pills and tinnitus was constantly there. Beware of stage 3 because soon you will regret when lose effectiveness of trobal on tinnitus. Try not to play too smart.
Also too huge jump is not ok, but if you go down you will notice heart problems, blood pressure and headaches.
You will just end with seizure by going 0-400-0-400 daily, are you sure you are safe?
What was your T in start?
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I was reading reports, and @locoyeti is ok , but his t was nothing 3/10 so even if no effect 3 is not something hard not to be controlled. My opinion. if he was 8/10 it would be different.
Same here about @Juan Carlos I cant find anywhere that your T was above 3/10?
Same here about @Juan Carlos I cant find anywhere that your T was above 3/10?
Retigabine is not a placebo, you may need to read the first hand experience from people that are on it rather than base your conclusion on an opinion of other who, really, are just making assumptions!
Actually I base my conclusion on posts from people with first hand experience, like Danny boy and locoyeti. Helping habituate is far from curing...
SoulStation
Member
I personally try this drug and felt like it didn't do anything in the end on the overall volume of my T. BUT I do also feel the same as @locoyeti in that I do not completely fear my T anymore. To me the adverse effects of the medication were just too much. It did have an effect on my T when I was taking it but definitely cause some adverse reactivity (If a dog barked, I heard 'Woof-Beep!', almost simultaneously and it just got really bad). I don't think I can say definitively that the spontaneous reactivity to sounds was due to RTG but I can say that after I stopped it (almost two weeks ago now) the beeping has drastically reduced. I also found that the hand tremor I was getting with RTG lingered for over a week after stopping usage and I'm now just feeling totally coordinated and sharp.
But that was just MY experience. Others seem to tolerate it better.
I hope this drug will be tested with better pre-screening and rules and stipulations. I feel like that will yield FAR more "objective" results. One thing could be if everyone who took it couldn't see what other people were feeling(Or maybe just didn't come on TT at all. I feel like seeing other people's results and what they're feeling affects objectivity with gusto. Thank you team Trobalt at Tinnitus Talk for giving your time trying to test the efficiency and sustainability of a possible means of relief to many sufferers.
But that was just MY experience. Others seem to tolerate it better.
I hope this drug will be tested with better pre-screening and rules and stipulations. I feel like that will yield FAR more "objective" results. One thing could be if everyone who took it couldn't see what other people were feeling(Or maybe just didn't come on TT at all. I feel like seeing other people's results and what they're feeling affects objectivity with gusto. Thank you team Trobalt at Tinnitus Talk for giving your time trying to test the efficiency and sustainability of a possible means of relief to many sufferers.
Nobody ever said that RTG is a cure!
But to say it was a placebo in reducing the volume for most users is not granted!
I do believe this drug has reduced the overall volume of my T. I am still tapering up in hopes of greater relief. We will see what happens...
- Feb 9, 2014
- 536
- Tinnitus Since
- 03/2013
- Cause of Tinnitus
- Likely stress, anxiety, an antibiotic and nsaids
I think it important to keep in mind that T likely has multiple etiologies; RTG may only address one of those and if that particular etiology is not the cause of your T then your experience with RTG will likely not be as hoped for.
theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
Is this comment speaking from personal experience, I don't ever recall you being on this stuff, so intrigued as to how you can state these two effects ?
I hope, but actually think that you are wrong, (respectively of coarse).
Reading the users experience thread, it seems that their is a real effect on T for most experimenters, and I do think that the length of time on this drug, (from anyone) has yet to reach the 4 to 6 month mark at top dosage that most expect for real changers to occur!
my plan is to skip 1 dosage per day. before i was on 300+300+200 on weekdays (800 in total)
400+400 is also 800 and i think is much more effective
im not missing 3 doses at all. Also nobody proved yet that Tinnitus its a kind of seizures. I dont have spikes, that would be analogue to a seizure attack. Its just a constant hiper-excitability of neurons on the auditory cortex. Seizures i think is something more complicated, that cannot be cured (tratments are for life) and most of times is a genetic-thing
My T has never been above 3/10, thats why i was considering i can be closer to the cure and worth to try Trobalt. Indeed I have an improvement, but slower than expected, anyways its real and 100% sure not placebo
Now I also know more about my T, I know the stages described before. Never thought i could have a pure tone on mi right ear and nothing else. I has been always billateral since its bornt.
With the new schedule is also easier to "life" as im not high at work or something
Dose at 8pm could me problematic well i will take that with 300 in case i have some social appointment..
and Dear @Telis you are the most negative person i can see in this forum, Zimichael and undecided are the ONLY persons that didn't experienced a change on T. Abosolutely all the others had an objetive change on T volume and pattern, so please dont confuse the new members that dont read the whole thread, also you never tried Retigabine and i think you will never try, so I dont know why are you messing on here and confusing other people, try other treatments on wich you may have some hope
I still say this is not a drug to mess about with, the side effects are far worse than having T. Neuromodulation I am sure is the way forward for many of use, without any pain or side effects and it helps BIG time. I know.
Yes, the side effects can be troublesome, but everyone is different and react differently to certain drugs and we are not talking long enough term use for truly dangerous side effects!
Most medication's have nasty side effects, and it's effects generally depend on the individual, unfortunately that is just part and parcel of pharmaceutical drugs.
We just have to take the good with the bad!
undecided
Member
Actually, as I mentioned numerous times in my reports, I had quite a reduction on my T by using retigabine and I am quite convinced that on some level, it works.
However, I felt that its effect was only temporary, I did not like the side effects and I don't consider my T loud enough to justify staying on a (possibly dangerous) drug.
Plus, I don't particularly like getting high from the drug since it interferes with my everyday life.
That's why I stopped.
Ok so we have only the case of Zimichael (super mega-chronic case) wich wasn't affected by RTG
It worths or not depends on every individual. What is worth for everyone is to give a try and see how it goes, if the balance of side effects is not good, just stop as you did. Noone reportered permanent side effects, this drug seems to quit body quite fast (10 days totally clean)
Im going to stay on RTG maximum until end of February, if hopefully some improvements stay, great, if not, i will be as I started, with a new experience, more knowledge and some highness times of joy )
The logical about homestasis and brain plasticity says that some improvement could stay there after quiting the drug (considering the T-cause is gone), now all we can do is cross fingers or pray for it
Maybe some people needs to stay one year on this to induce plasticity, in that case is no worth and better wait for another drug, we know nothing about it. What im pretty sure is that the real pill if some day comes is gonna be similar to RTG without its side effects, and will need some time to induce permanent changes for sure
@111
Sorry to be a pain and maybe ask you a question which info you may already have posted.
You said this stuff has an effect of some sorts....
Please could you tell us though whether you have noticed a reduction in your T whilst on RTG and when you went off it to have your beers last week, did it come back, go up or remain the same?
thanks for the info..
Sorry to be a pain and maybe ask you a question which info you may already have posted.
You said this stuff has an effect of some sorts....
Please could you tell us though whether you have noticed a reduction in your T whilst on RTG and when you went off it to have your beers last week, did it come back, go up or remain the same?
thanks for the info..
ok, i think i will keep on this schedule, dont wanna risk too much my T because of experimenting
8pm: 400mg
4am: 300 or 400mg (not sure prob 400)
12am: 200 mg
8pm: 400mg
4am: 300 or 400mg (not sure prob 400)
12am: 200 mg
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