Mo_Mo
Member
- Dec 27, 2014
- 100
- Tinnitus Since
- 25/11/2014
- Cause of Tinnitus
- Unknown, Started A Week After A Cold
@theekarwash were you able to get more RTG and did the T go back to the same level as before starting when you stopped?
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Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
MemberIf H is gone can we assume that some hearing improvements and thus lower T may be permanent for @Danny Boy ?
can I ask something to add in the user experience forum?
- time when you started using
- T severity before you started using
thank you so much for all you guys testing this drug! I`m really thinking of doing it myself.
Anyone care to compile a how to and how not to manual for new users?
- time when you started using
- T severity before you started using
thank you so much for all you guys testing this drug! I`m really thinking of doing it myself.
Anyone care to compile a how to and how not to manual for new users?
Hi Nils
How are you?
If you scan back through mpt posts you will see what regime he suggested and used and what everyone seems to have based their usage on.
Danny Boy is on 1200mg per day.
@Nils In my experience, the big "how not to" is, don't go up too fast once you start experiencing side effects, or you reach 300mg TID. It's possible to get your brain used to higher doses, but the higher you go the more time it takes. At 100mg, 150, no problem - you can do 2 or 3 days then take another jump. But once you get close to those upper doses, you have to take it slow or risk getting a brick to the head.
I started on 50mg TID for a day and I got some heart palps at night. I had pre-existing condition, so this might be aggravating it. I am not sure if its the drug or not, so i will stop and reinstate and evaluate.
theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
I haven't gone back to the doctor since my RTG ran out. Yeah my T is back to baseline.
Wow, I'm reading some pretty good reports from the other thread, might have to try and get some of this.
What is the recommended dose for beginners?
What is the recommended dose for beginners?
Same as u can read on prospect because thats regarding to tolerating side effects, if u dont have them, u can rise little faster, ie increase every 4 days instead of 7
I was steady, Juan Carlos is steady. Danny Boy had a big dip in his efficacy before getting on the right dose. These are very complicated, personalized experiences, but we've pretty well established that you are going to notice a difference - how much, for how long, with what side effects - that's what you have to experience for yourself. Will have an updated User Experience later tonight.
Hey, got same experience on eye floaters and gave same explanation in here some time ago. RTG shut down any "automated" learning, aka type, hand-writing, play guitar, skate, dress up fast etc etc
Another way to explain, Just try to see the difference between the first day you were driving your car, and now you driving the same car 10 years later. First day you felt everything happening on it, all was new and you were paying attention to every feeling while driving, you enjoyed like a child with new toy. Now you drive almost automatically, you dont enjoy the drive at all and you think in any random thing except that you are driving a cool car
Yesterday I got new side effect, not still 100% sure if is attached to RTG, but my right foot goes to "sleep" more often, like for example u are sitting in a wrong position or u are in a cold place, i think its also called numbness. It used to happen me on very cold places but now also when on RTG 300mg
undecided
Member
I think that @Christian78 mentioned something similar.
I haven't experienced any of the "foot going to sleep" side effect but I do sometimes feel that the top of my right and left index fingers feel slightly numb. The feeling is quite pronounced when I've taken an aspirin-like 300mg dose.
I believe it is related to blood circulation and the cardiac potassium channels (RTG definitely has some effect there). The heart starts disturbing the blood flow going to the extremities (feet, hands).
I don't think it's permanent but I can't be 100% certain. I stopped RTG completely for about a month and any numbness completely went away.
Just my two cents.
no specific answers for that
you decide how much you want to risk, i think take 3 months max (900 or 1200) dose is quite safe
@Christian78 made tolerance after 5 or 6 months i think
dose u decide according to the effect on your T. almost all of us get effect with a 300mg tid dose
@DannyBoy has been on it since beginning of November......so just over three months now........still on 1200mg per day and doing very well..........
@Nils
can you get a script for it?
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I made tolerance and i stoped started again, it has effect all the time but point is that i was never on 400 mg, and 300mg i could not stand more that 1 week, i was maximum on 250+250+300 and after 3-4 day i get toatly lost so then i was on 750-800mg daily max i could not stand side effectsö
And last 15 days i develop paraesthesia-restless leg syndrome. MY doctor does not want to send me to neurologist so i will go to home country, and that mean i will meet neurologist.
My entire blood tests are ok, from ordinary, rheumatic, electrolytes, immunology, infectious, hiv, infection STD all is ok BUT i have PAINS all over body and they get worse every day, 18 dec it was numbness on leg , today when i walk i am ok, in morning ok, in evening quite bad, and sleep devastated, and i had kidney stone. i know how to handle kidney stones so i got attack on saturday but i peed it out last night.
final conclusion on me who is longest on trobalt:
- TROBALT FOR ME LOWER TINNITUS AND IT LOST EFFECT BUT I LOWERED DOSAGE, effect exist still
- trobalt does block you so you can think about problems, so it lift you up and you get better
- probably i have paresthesia because of trobalt and restless leg syndrome so i will have to withdraw completely to eliminate that as possible cause
i use max 200 mg and i have effect that makes tinnitus bearable and not so destructive on mind plus it helps me sleep (dont ask how, when i stoped it for 3 days to clear out and are pain dye to trobalt i could not sleep, i wake up with severe tinnitus)
I have noticed that there are a few in this group who are trying Trobalt with varying degrees of success. I am curious if any have had the blue skin side effect.
https://www.epilepsy.org.uk/news/news/trobalt-warning-effects-skin-and-eyes
In my youth I worked in a hospital where some of the patients received meds that turned their skin purple. I can't recall the name of it. In my current line of work I've had experience with several people who take anti seizure meds. In my limited experience it appears that its not if but when will you have the side effects. You really need a doctor to be constantly monitoring your dosage and the side effects. I was wondering if any of those who are on Trobalt are able to function at a level that would allow them to lead a decent quality of life. Hopefully Autophony or one of the AM variations can do the job without the nasty side effects.
https://www.epilepsy.org.uk/news/news/trobalt-warning-effects-skin-and-eyes
In my youth I worked in a hospital where some of the patients received meds that turned their skin purple. I can't recall the name of it. In my current line of work I've had experience with several people who take anti seizure meds. In my limited experience it appears that its not if but when will you have the side effects. You really need a doctor to be constantly monitoring your dosage and the side effects. I was wondering if any of those who are on Trobalt are able to function at a level that would allow them to lead a decent quality of life. Hopefully Autophony or one of the AM variations can do the job without the nasty side effects.
FounderAs far as I know, nobody here who has taken Retigabine has reported that particular side effect.
Of course we have a limited sample size and none here have taken it for an extended period of time (e.g., for over a year).
I dont know cos everyone is different but from what I know of other people on this drug, feel you should have had some effect by now.
Please feel free to differ anyone............
most of us get a noticeable reduction or pattern change (cleaned tone) with the 300 mg dose
I think im going on the same way of you
since one week or so i get more often these paresthesia in my foot fingers... and also i think Trobalt is not being so effective as in the beginning on high dose, anyways, i am tapering off now, this week is 400/day and next week 300 and so... luckily my T is totally bearable so i have no problem on quitting the drug, from then i will use maybe just take like aspirin and pray for AUT
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
maximum withdrawal recommended is 150 mg less per day or 50mg lower dosages....
rtwombly said:
Are floaters listed on the side-effects sheet? Sometimes eye floaters just occur: for example I havenät had them for almost 10 years and now I do for no apparent reason (I of course also have a huge minus, -7,5).
No need to state again that experience with this drug is very individualized, but I agree you'll likely feel something at 300mg TID. However, I'd recommend trying 200mg TID for a full week before moving up, if you have the patience. The drug certainly builds up in your system over time, and you may discover that you don't need to go up as high if you take it slow.
It's off topic here, but just to clear up, I was talking about my experience with Potiga (I think Stina got that, just wanted to make it plain for everybody). Juan Carlos came up with a theory I agree with, which is that Retigabine's tendency to blank out bits of your memory temporarily extends to blanking out some of your learning memory. His example was driving like a teenager, rather than somebody who has many years of experience. You've literally forgotten how to drive like an adult.
I've had eye floaters pop up over the years, and my brain always learns to ignore them (wish my ears were as smart!). We think what's going on here is Retigabine is making me forget how to ignore the floaters, so I'm seeing 'em all at once. All my other side effects have been temporary, so I figure this one will go away. BUT! Retigabine is thought to cause retinal pigmentation changes, and I'm not sure how that would present, so I figure better safe than sorry. I'll update the user experience thread if the floaters go away, or if they persist.
Okay! Back on topic.
I'm 90% sure of that. Floaters just "appear" after taking pills, and laters "go away". I explaneid that so time ago in RTG thread. RTG removes any kind of "habituation".
I wouldn't worry about that, also is not listed a side effect.
Imagine you have been lame from one leg for long time but u can walk normally, your muscles compensate that automatically and you are never aware that you are lame, take some RTG and... tachan...
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