Retigabine (Trobalt, Potiga) — General Discussion

#5,521
linearb said:
No one has any idea why the skin discoloration occurs; therefore, it's unreasonable to suggest that it's caused by one specific receptor site or another.

Trobalt is a complex molecule which does several things we know of, and maybe others -- it's entirely possible that the discoloration effect comes from something entirely unrelated to KV channels.

No one has any idea if AUT00063 might show similar effects, either -- this is exactly what phase III trials and post-release longitudinal studies are for.

I share your optimism that AUT00063 might provide some relief for a lot of people, but I think it's irresponsible to act like we have a ton of data on how all this works when we have almost none.
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Totally agree. AU may have side-effects we don't know about. It took a few years to find out about the pigment changes in the skin/lips and eyes, for trobalt. I'm hoping AU is safer, but as you said, we won't know for another few years.
 
#5,524
#5,527
Is there a summary document of the results of the various people that have tried Retigabine or Kepra? It is really kind of a mess to go through the hundreds, perhaps thousands of messages to make a conclusion as to how effective the treatment is. Also, for those that participated in this what approach did you use to talk your doctor in giving you a prescription for the drug(s)? I know some of you just went and acquired it in various countries where a prescription is not needed, but that is not possible in the USA.
 
#5,528
bellringer said:
Is there a summary document of the results of the various people that have tried Retigabine or Kepra? It is really kind of a mess to go through the hundreds, perhaps thousands of messages to make a conclusion as to how effective the treatment is.
Click to expand...
What you have here is a summary of uncontrolled, unblinded anecdotes. This is not data. That is, a summary of what is written here, should not in any way be a context to interpret what you should expect if you decide to take this drug. There are reasons that large-sample-size, blinded, placebo-controlled research is necessary for scientific data.

Also, for those that participated in this what approach did you use to talk your doctor in giving you a prescription for the drug(s)? I know some of you just went and acquired it in various countries where a prescription is not needed, but that is not possible in the USA.
Click to expand...
I googled "neurologist epilepsy <cityname>", called the office of the first doctor I found, showed up with a printout of parts of this thread and some research abstracts, and walked out with a prescription (which I never actually filled, but that's another story). Your mileage may vary, but if you're in a large metropolitan area I'd be very surprised if you can't find someone who will accommodate this. What you want is to find someone who has a reasonable amount of experience prescribing this particular drug; doctors who have no knowledge of a given drug may be understandly reluctant to prescribe it off label.
 
#5,530
Danny Boy said:
Totally agree. AU may have side-effects we don't know about. It took a few years to find out about the pigment changes in the skin/lips and eyes, for trobalt. I'm hoping AU is safer, but as you said, we won't know for another few years.
Click to expand...
Must be one of those drugs that you should keep out of sunlight ... so after taking the drug it moves through the body and gets exposed trough skin and eyes and reacts ... so best option is to live in cold climate or protect yourself from sun while taking it. Same goes for chemo therapy .. .your not alowed to be in direct sunlight ... my mom has some eye floaters because of it now.
 
#5,531
nills said:
Must be one of those drugs that you should keep out of sunlight ... so after taking the drug it moves through the body and gets exposed trough skin and eyes and reacts ... so best option is to live in cold climate or protect yourself from sun while taking it. Same goes for chemo therapy .. .your not alowed to be in direct sunlight ... my mom has some eye floaters because of it now.
Click to expand...

Found this- Says how trobalt works and what channels it works on.

http://onlinelibrary.wiley.com/store/10.1111/j.1528-1167.2011.03365.x/asset/j.1528-1167.2011.03365.x.pdf;jsessionid=5318D96033B692D8EEF6BC494D57953D.f02t04?v=1&t=id04l0ui&s=ed145ab319f3a982eafc68cecf5c1bcd095d5cad&systemMessage=Wiley+Online+Library+will+have+intermittent+access+on+8th+August+2015+from+10:00-16:00+BST+/+05:00-11:00+EDT+/+17:00-23:00+SGT+for+essential+maintenance.++Apologies+for+the+inconvenience.

"The pharmacologic profile of retigabine [RTG (international nonproprietary name); ezogabine, EZG (U.S. adopted name)], is different from all currently approved antiepileptic drugs (AEDs). Its primary mechanism of action (MoA) as a positive allosteric modulator of KCNQ2–5 (Kv7.2–7.5) ion channels defines RTG/EZG as the first neuronal potassium (K+ ) channel opener for the treatment of epilepsy. KCNQ2–5 channels are predominantly expressed in neurons and are important determinants of cellular excitability, as indicated by the occurrence of human genetic mutations in KCNQ channels that underlie inheritable disorders including, in the case of KCNQ2/3, the syndrome of benign familial neonatal convulsions. In vitro pharmacologic studies demonstrate that the most potent action of RTG/EZG is at KCNQ2–5 channels, particularly heteromeric KCNQ2/3. Furthermore, mutagenesis and modeling studies have pinpointed the RTG/EZG binding site to a hydrophobic pocket near the channel gate, indicating how RTG/EZG can stabilize the open form of KCNQ2–5 channels; the absence of this site in KCNQ1 also provides a clear explanation for the inbuilt selectivity RTG/EZG has for potassium channels other than the KCNQ cardiac channel. KCNQ channels are active at the normal cell resting membrane potential (RMP) and contribute a continual hyperpolarizing influence that stabilizes cellular excitability. The MoA of RTG/EZG increases the number of KCNQ channels that are open at rest and also primes the cell to retort with a larger, more rapid, and more prolonged response to membrane depolarization or increased neuronal excitability. In this way, RTG/EZG amplifies this natural inhibitory force in the brain, acting like a brake to prevent the high levels of neuronal action potential burst firing (epileptiform activity) that may accompany sustained depolarizations associated with the initiation and propagation of seizures. This action to restore physiologic levels of neuronal activity is thought to underlie the efficacy of RTG/EZG as an anticonvulsant in a broad spectrum of preclinical seizure models and in placebocontrolled trials in patients with partial epilepsy. In this article, we consider the pharmacologic characteristics of RTG/EZG at the receptor, cellular, and network levels as a means of understanding the novel and efficacious MoA of this new AED as defined in both preclinical and clinical research."
 
#5,534
Hello my friends, my tinnitus is mild to moderate compare to other forum members i had to admit that. It all started in march 7 with an acoustic trauma in an open (no roof) restaurant/bar at the beach here in costa rica. I had hearing loss in both ears (moderate in the left and mild in the right at the higher frequencies, 4000 hz down to 45 db). It was a very stressful to say the least for two months (depression, 7 kgs weight lost, a lot of crying, yes even 48 year old man cry and loss of sleep). Thank god i have a wonderful wife and with her help manage to get out of the depression i was in an my tinnitus lowered to a 6 level (10 for me being the highest it got in the beginning, as you know its all very subjective). I have more or less become habituated to my tinnitus and learn to live with it (no depression, sleep well and have retaken my life.

I am posting today no to make anyone feel bad, just the contrary to give you a little bit of hope like i now have.

I started taking potiga or trobalt (got it in the usa and yes very very expensive) on Wednesday, 100 mg three times a day, no good or bad effects at that level. Yesterday morning had another 100 mg and at 2 pm i decided to take 200 mg. Approximately 20 to 25 minutes later i started to feel drowsy or drunk and very gradually but fast my tinnitus lower to a 2 or 3 in both ears. The effect lasted for about 15 to 20 minutes and then the drowsy sensation went away and my tinnitus went up again to a 5 or 6. At night i took 200 mg again and went to sleep like a log at 10 pm so i can not tell you anything about that except that it was one of the most satisfactory and deep sleep periods i ever had. Woke up at 4 am to pee and my tinnitus was at 2 i was so happy that i want it to stay awake but i had work today and decided to take 100 mg at that time instead of 200 mm instead that at 6 am, just because its easier for me to take the middle of the day pill at 12 pm ( i start working at 8am break and the 2 pm until 6 pm) in case i got the drunk feeling once again. Now come the good part. Had my pill today (200 mg, empty stomach) at 12:35 pm tinnitus at base level 5 or 6, at 12:45 pm started feeling woozy again and after a minute my tinnitus went to 0 even with my ears plugged with my fingers, regardless to say first i cried like a baby finally feeling normal again, its strange how you can miss and desire for that inner peace again if only for a few minutes. Here is what when on:

12: 35 pm 200 mg pill on an empty stomach
12:45 pm woozy or drunk feeling side effect and tinnitus went to ZERO.
12:51 pm left ear 0, right ear 1.
12:54 pm left ear 0, right ear 2
Up to this time i had to plugged my ears to hear if i had tinnitus.

12:55 left ear 1, right ear 3
12:58 left ear 5, right ear 4

1:05 pm left ear 5 right ear 4 (more or less back to base, usually a 5 or a 6 in both ears)

So danny boy just want it to say that i love you in a manly way. If it where not for you and your 50,000 post i would had never tried it. So finally my conclusion is that at least for male 48 years old with 5 month acoustic trauma, trobalt definitely does something. I will continue gradually to 400 mg three times a day at least for a month trying to eradicate it. Hopefully i will get mpt results. If not trobalt or autifony maybe sci flour will do the trick they are certainly in the right track and now i now why danny boy its so optimistic, you really have to live those few minutes of silence to get your hope back again. Sorry for the long post.
 
#5,535
papu said:
Hello my friends, my tinnitus is mild to moderate compare to other forum members i had to admit that. It all started in march 7 with an acoustic trauma in an open (no roof) restaurant/bar at the beach here in costa rica. I had hearing loss in both ears (moderate in the left and mild in the right at the higher frequencies, 4000 hz down to 45 db). It was a very stressful to say the least for two months (depression, 7 kgs weight lost, a lot of crying, yes even 48 year old man cry and loss of sleep). Thank god i have a wonderful wife and with her help manage to get out of the depression i was in an my tinnitus lowered to a 6 level (10 for me being the highest it got in the beginning, as you know its all very subjective). I have more or less become habituated to my tinnitus and learn to live with it (no depression, sleep well and have retaken my life.

I am posting today no to make anyone feel bad, just the contrary to give you a little bit of hope like i now have.

I started taking potiga or trobalt (got it in the usa and yes very very expensive) on Wednesday, 100 mg three times a day, no good or bad effects at that level. Yesterday morning had another 100 mg and at 2 pm i decided to take 200 mg. Approximately 20 to 25 minutes later i started to feel drowsy or drunk and very gradually but fast my tinnitus lower to a 2 or 3 in both ears. The effect lasted for about 15 to 20 minutes and then the drowsy sensation went away and my tinnitus went up again to a 5 or 6. At night i took 200 mg again and went to sleep like a log at 10 pm so i can not tell you anything about that except that it was one of the most satisfactory and deep sleep periods i ever had. Woke up at 4 am to pee and my tinnitus was at 2 i was so happy that i want it to stay awake but i had work today and decided to take 100 mg at that time instead of 200 mm instead that at 6 am, just because its easier for me to take the middle of the day pill at 12 pm ( i start working at 8am break and the 2 pm until 6 pm) in case i got the drunk feeling once again. Now come the good part. Had my pill today (200 mg, empty stomach) at 12:35 pm tinnitus at base level 5 or 6, at 12:45 pm started feeling woozy again and after a minute my tinnitus went to 0 even with my ears plugged with my fingers, regardless to say first i cried like a baby finally feeling normal again, its strange how you can miss and desire for that inner peace again if only for a few minutes. Here is what when on:

12: 35 pm 200 mg pill on an empty stomach
12:45 pm woozy or drunk feeling side effect and tinnitus went to ZERO.
12:51 pm left ear 0, right ear 1.
12:54 pm left ear 0, right ear 2
Up to this time i had to plugged my ears to hear if i had tinnitus.

12:55 left ear 1, right ear 3
12:58 left ear 5, right ear 4

1:05 pm left ear 5 right ear 4 (more or less back to base, usually a 5 or a 6 in both ears)

So danny boy just want it to say that i love you in a manly way. If it where not for you and your 50,000 post i would had never tried it. So finally my conclusion is that at least for male 48 years old with 5 month acoustic trauma, trobalt definitely does something. I will continue gradually to 400 mg three times a day at least for a month trying to eradicate it. Hopefully i will get mpt results. If not trobalt or autifony maybe sci flour will do the trick they are certainly in the right track and now i now why danny boy its so optimistic, you really have to live those few minutes of silence to get your hope back again. Sorry for the long post.
Click to expand...
from the results i see it seems to help more acute Tinnitus than anything and the severity of it..
 
#5,536
papu said:
Hello my friends, my tinnitus is mild to moderate compare to other forum members i had to admit that. It all started in march 7 with an acoustic trauma in an open (no roof) restaurant/bar at the beach here in costa rica. I had hearing loss in both ears (moderate in the left and mild in the right at the higher frequencies, 4000 hz down to 45 db). It was a very stressful to say the least for two months (depression, 7 kgs weight lost, a lot of crying, yes even 48 year old man cry and loss of sleep). Thank god i have a wonderful wife and with her help manage to get out of the depression i was in an my tinnitus lowered to a 6 level (10 for me being the highest it got in the beginning, as you know its all very subjective). I have more or less become habituated to my tinnitus and learn to live with it (no depression, sleep well and have retaken my life.

I am posting today no to make anyone feel bad, just the contrary to give you a little bit of hope like i now have.

I started taking potiga or trobalt (got it in the usa and yes very very expensive) on Wednesday, 100 mg three times a day, no good or bad effects at that level. Yesterday morning had another 100 mg and at 2 pm i decided to take 200 mg. Approximately 20 to 25 minutes later i started to feel drowsy or drunk and very gradually but fast my tinnitus lower to a 2 or 3 in both ears. The effect lasted for about 15 to 20 minutes and then the drowsy sensation went away and my tinnitus went up again to a 5 or 6. At night i took 200 mg again and went to sleep like a log at 10 pm so i can not tell you anything about that except that it was one of the most satisfactory and deep sleep periods i ever had. Woke up at 4 am to pee and my tinnitus was at 2 i was so happy that i want it to stay awake but i had work today and decided to take 100 mg at that time instead of 200 mm instead that at 6 am, just because its easier for me to take the middle of the day pill at 12 pm ( i start working at 8am break and the 2 pm until 6 pm) in case i got the drunk feeling once again. Now come the good part. Had my pill today (200 mg, empty stomach) at 12:35 pm tinnitus at base level 5 or 6, at 12:45 pm started feeling woozy again and after a minute my tinnitus went to 0 even with my ears plugged with my fingers, regardless to say first i cried like a baby finally feeling normal again, its strange how you can miss and desire for that inner peace again if only for a few minutes. Here is what when on:

12: 35 pm 200 mg pill on an empty stomach
12:45 pm woozy or drunk feeling side effect and tinnitus went to ZERO.
12:51 pm left ear 0, right ear 1.
12:54 pm left ear 0, right ear 2
Up to this time i had to plugged my ears to hear if i had tinnitus.

12:55 left ear 1, right ear 3
12:58 left ear 5, right ear 4

1:05 pm left ear 5 right ear 4 (more or less back to base, usually a 5 or a 6 in both ears)

So danny boy just want it to say that i love you in a manly way. If it where not for you and your 50,000 post i would had never tried it. So finally my conclusion is that at least for male 48 years old with 5 month acoustic trauma, trobalt definitely does something. I will continue gradually to 400 mg three times a day at least for a month trying to eradicate it. Hopefully i will get mpt results. If not trobalt or autifony maybe sci flour will do the trick they are certainly in the right track and now i now why danny boy its so optimistic, you really have to live those few minutes of silence to get your hope back again. Sorry for the long post.
Click to expand...

I'm glad it's working for you! I'm happy to see you're getting better. And I'm happy my posts are helping people and of course I'm optimistic, trobalt does work and I know Autifony will pull through. I do get a lot of stick, but I don't give up my hope, my hope to help others.
 
#5,538
I dont now if you meant Geo or me but in any case i had it since march 7, 2015 (actually the acoustic trauma was on saturday 7, the tinnitus started very softly in the left ear in tuesday march 10 and tuesday march 18 went into full blast and in both ears.
 
#5,539
papu said:
I dont now if you meant Geo or me but in any case i had it since march 7, 2015 (actually the acoustic trauma was on saturday 7, the tinnitus started very softly in the left ear in tuesday march 10 and tuesday march 18 went into full blast and in both ears.
Click to expand...
That's how mine started 4 years ago left ear soft then full blast both.
 
#5,543
preslys said:
when I write this message I am a 1/10 I took my first tablet this aftennoon. the effect was very quickly
Click to expand...

i woke up to a nice 1/2 -- left/right at 200 mg three times a day
also the sound is more chirpy in nature instead of the 5 month horrible eeeeeeeeeeeeeee (pure tonal)

Preslys did your T went back up to base level after not taking Trobalt?
 
#5,546
My tinnitus is kind of back to where it was before ... something inside to it has changed a little but the sound itself has returned ... I do have to say I don`t think I took Trobalt long enough ... I was only a few weeks on max dose.. I might do another round soon, after I speak to my neurologist on the 18th.
 
#5,547
nills said:
My tinnitus is kind of back to where it was before ... something inside to it has changed a little but the sound itself has returned ... I do have to say I don`t think I took Trobalt long enough ... I was only a few weeks on max dose.. I might do another round soon, after I speak to my neurologist on the 18th.
Click to expand...

I'm doing a new experiment and I will let you guys/gals know if it works.
 
#5,549
Richard zurowski said:
I like what you are doing on this forum Danny.Trying to find ways to help us all who suffer from tinnitus. I also like your positive attitude keep up the good work.
Click to expand...

Thank you. I do my best and it's all because I care about my fellow sufferers. In-fact, I'm taking the risks so you don't have to!
 

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