Retigabine (Trobalt, Potiga) — General Discussion

[Zimichael]

Hey guys skipped a dose by mistake today... Took 100 at 9:40 am when I got up went to work to teach and forgot to bring my other two doses for 100 mg . Got home from work at 9:30 pm and took 150 mg so I could make up for missed dose. But I'd technically still have 50 mg left to take. Should I take it? Or just stay on course?

SoulStation...It is really easy to forget to take this stuff (memory for "remember to take med" kinds of things has got very poor for me on Trobalt so I use an alarm clock!)...Christian spaced some doses out too if I recall.
Personally I would just leave it and re-boot tomorrow, unless you are planning to go up in dose anyhow...which I think you are not, due to supply problems. (Joining that club myself!).

best, Zimichael

 

[Zimichael]

@SoulStation ...see PM to you in a moment.

No idea if the other Canadian Pharmacies use the same drop shipper in UK. In case can ask, it's a specialist outfit for international meds shipping, in Hounslow, UK called "Westlake Pharmacy" http://www.globalpharmatrading.com/

Zim.

 

[SoulStation]

I think I will have to call a bunch of them...maybe we could make it a team effort to "hunt the cheapest potiga"?
You game?

 

[rtwombly]

@Lep glad to see you, my friend. Hope you will have more success and less frustration this time. From what I'm hearing, I'll definitely need some help if I ever do find a doctor to prescribe me Potiga. I'll have to have my wife take me everywhere and remind me to take my pills!

@SoulStation please share any success you have with the Canadian pharmacies. Wish it was possible to order straight from the UK. Hope you and @Zimichael can fine a reliable supply.

 

[Telis]

Intersting read on GSK (company that developed retigabine) and their criminal activity.....


http://m.naturalnews.com/news/036385_GlaxoSmithKline_criminal_fraud_bribery.html

 

[111]

Intersting read on GSK (company that developed retigabine) and their criminal activity.....

Would not read too much into that one mate, see below, they are all at it in some form. Where there are large amounts of money involved there will always be fraud and back handers going on, and that applies to all industries not just medical !


Pfizer[2]$2.3 billionOff-label promotion/kickbacks2009Bextra/Geodon/
Zyvox/LyricaFalse Claims Act/FDCA
Abbott Laboratories[6]$1.5 billionOff-label promotion2012DepakoteFalse Claims Act/FDCA
Eli Lilly[7]$1.4 billionOff-label promotion2009ZyprexaFalse Claims Act/FDCA
TAP Pharmaceutical Products[8]$875 millionMedicare fraud/kickbacks2001LupronFalse Claims Act/
Prescription Drug Marketing Act
Amgen[9]$762 millionOff-label promotion/kickbacks2012AranespFalse Claims Act/FDCA
GlaxoSmithKline[10]$750 millionPoor manufacturing practices2010Kytril/Bactroban/
Paxil CR/AvandametFalse Claims Act/FDCA
Serono[11]$704 millionOff-label promotion/
kickbacks/monopoly practices2005SerostimFalse Claims Act
Merck[12]$650 millionMedicare fraud/kickbacks2008Zocor/Vioxx/PepsidFalse Claims Act/
Medicaid Rebate Statute
Purdue Pharma[13]$601 millionOff-label promotion2007OxycontinFalse Claims Act
Allergan[14]$600 millionOff-label promotion2010BotoxFalse Claims Act/FDCA
AstraZeneca[15]$520 millionOff-label promotion/kickbacks2010SeroquelFalse Claims Act
Bristol-Myers Squibb[16]$515 millionOff-label promotion/
kickbacks/Medicare fraud2007Abilify/SerzoneFalse Claims Act/FDCA
Schering-Plough[17]$500 millionPoor manufacturing practices2002ClaritinFDA Current
Good Manufacturing Practices
Schering-Plough[18]$435 millionOff-label promotion/
kickbacks/Medicare fraud2006Temodar/ Intron A/K-Dur/
Claritin RediTabsFalse Claims Act/FDCA
Pfizer[19]$430 millionOff-label promotion2004NeurontinFalse Claims Act/FDCA
Cephalon[20]$425 millionOff-label promotion[21]2008Actiq/Gabitril/ProvigilFalse Claims Act/FDCA
Novartis[22]$423 millionOff-label promotion/kickbacks2010TrileptalFalse Claims Act/FDCA
AstraZeneca[23]$355 millionMedicare fraud2003ZoladexPrescription Drug Marketing Act
Schering-Plough[24]$345 millionMedicare fraud/kickbacks2004ClaritinFalse Claims Act/
Anti-Kickback Statute

 

[dan]

T sufferers have depleted the UK's Retigabine stock in 3 months. I can imagine the demand for Autifony - every pill will be sold as soon as it comes off the conveyor

 

[dan]

Intersting read on GSK (company that developed retigabine) and their criminal activity.....


http://m.naturalnews.com/news/036385_GlaxoSmithKline_criminal_fraud_bribery.html

You can add baby killer to GSK's crimes,
http://www.buenosairesherald.com/ar...-over-vaccine-trials-14--babies-reported-dead

The charges included experimenting with human beings as well falsifying parental authorizations so babies could participate in the vaccine-trials conducted by the laboratory from 2007 to 2008.

 

[Zimichael]

First up...I am going up again in dose. I don't really have an option if I want to at least try my theory that "higher saturation" may kick the Kv doors open a bit before my Trobalt runs out.

My current stash was going to run out 17 days from Monday (at 100 mg x 3/day) when I reordered. That was OK timing if it took two weeks to get to me like last time. So it had to ship by Wednesday or Thursday from UK. It has not. I just phoned (3:00 pm already in London/Hounslow). With weekend next, that means I am SOL on the old plan. It's over. I cancelled my re-order. No way it will make it in time to avoid a whole re-boot.
Thus I am going to ramp up quickly to 600 mg total per day, for just a few days (all I can do at this point), and then taper off pretty darn fast...I don't particularly like the idea of doing this, but I also don't like the idea of semi-wasting this whole experiment.

Yeah, a little more learning has gone in the Trobalt users box, and indeed I did not have any angels from heaven bestowing quieter T within 450 mg total per day, but...Not enough data. Time to kick the door once, I hope. Side effects may change that plan as always!
As of now am on 450 mg per day total, and hope to be at 600 mg total/day on Sunday = my target dose. I guess I will just play it day by day, as my spacey head stuff is still lurking and I suspect it is a metabolite detox issue. (Apparently, c/o a genetic test in 2006 when I was so out of it I can't remember now exactly, one of my Cytochrome P450 pathways, or Sulphation pathways may be somewhat compromised. Very common apparently, as having every Phase I and Phase II pathway 100% may put you in Nature's "most favoured" list).
Anyhow, if I become a zombie, Christian, Lep and I can share "how dumb can we get" stories....Sigh!

Speaking of @Lep ...Lep, can you give us more info please???!!! The only thing I can see on your Profile is you have had T since mid 2013, so that puts you in the 'semi-long-term' camp. More details would be nice, and how you have ramped up to current dose....Uhhh, and plans on eventual target dose. Oh, and your body weight would be nice! And... well you get the idea.

Best, Zimichael

 

[SoulStation]

T sufferers have depleted the UK's Retigabine stock in 3 months. I can imagine the demand for Autifony - every pill will be sold as soon as it comes off the conveyor

Where did you get this info from? On GSKs entire stock of Retigabine being gone? Other than on here of course.

 

[undecided]

@SoulStation I would assume that dan was joking... If GSK's entire stock has been depleted by Zimichael, myself (I ordered 42 pills from the UK) and a couple of others, then they need to seriously reconsider their logistic capabilities

 

[rtwombly]

Somehow I missed @Freddie in my attempt to draft a UK insider for the Autifony trial. He appears to qualify, per his post on the Retigabine User Experience thread!

@Freddie, I started a private conversation, but feel free to ask any questions you have here or on the Autifony thread - those of us who've been watching the research for awhile would be glad to get you up to speed.

If you're sticking to Retigabine, no problem. Just want you to be aware of your options. Thanks for posting on the User Ex. thread and please keep us up-to-date!

 

[Lep]

Speaking of @Lep ...Lep, can you give us more info please???!!! The only thing I can see on your Profile is you have had T since mid 2013, so that puts you in the 'semi-long-term' camp. More details would be nice, and how you have ramped up to current dose....Uhhh, and plans on eventual target dose. Oh, and your body weight would be nice! And... well you get the idea.

Started at 100 mg/day for 3 days,then 100 mg every week until current dose.I want to reach 600 mg/day but it's difficult,500 mg made me like a zombie...I'm very thin, only 50 kg. My tinnitus is central with chronic migraine,it's quite young but very hard (10 spikes in 15 months)

 

[111]

After 15 days being "meds free" my tinnitus and migraine worsened

Lep, I am just trying to ascertain what you mean by the above, do you think that by taking Trobalt, then stopping it, made your symptons worse in total than they used to be in the first place, or did it just go back to its "normal" level. I read about some people who say it is working and reducing symptons, but when i read yours i think the opposite, can you clarify at all please , cheers.

 

[rtwombly]

@Lep, please fill out Markku's forms at the top of the User Experience thread when you get the chance.

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/

Wow, at 50kg I wouldn't think you'd need to go much higher in dosage. Maybe 450 (150 + 150 + 150) is all you need.

 

[Zimichael]

Ok guys, I want to update about my retigabine story.As you know,I stopped the medication after a few days because I had vision problems with a low dose (200 mg). After 15 days being "meds free" my tinnitus and migraine worsened...I restarted desperately the therapy 45 days ago.Actually I'm on 400 mg/day (100+200+100),no side effects (only a bit of tiredness in the afternoon)...the last worsening disappeared, no effects on "old" tinnitus.I tried 500 mg for one day (200+200+100) but I was like a dead,I can't even drive my car.
Regards

Lep...Yes, I am confused too by your last post, as you said there that: Started at 100 mg/day for 3 days, then 100 mg every week until current dose. But if 45 days ago...That would be 3 days for initial loading dose of 300 mg...then 42 days = 6 weeks. So if jumping up 100 mg every week that would put you at maybe 300 + (100 x 5) = 800 mg total per week?!...Which I know is not the case.

So yes, some clarification would be great as am zeroing in on 600 mg tomorrow with very fast ramp up. Thanks!

Best, Zimichael

 

[TomKA]

how about ordering Retigabine compound and make your own pills ;-)
(scroll down a little bit to find Retigabine)

http://www.sigmaaldrich.com/life-science/cell-biology/cell-biology-products.html?TablePage=9551103

Here you can get a wide range of potassium channel modulators.
Nevertheless interesting to see what you can get there... if you are approved to buy there...

 

[Lep]

Lep, I am just trying to ascertain what you mean by the above, do you think that by taking Trobalt, then stopping it, made your symptons worse in total than they used to be in the first place, or did it just go back to its "normal" level. I read about some people who say it is working and reducing symptons, but when i read yours i think the opposite, can you clarify at all please , cheers.

The first time I took trobalt for only 5 days,I haven't any effect.Tinnitus increased 10 days after the discontinuation,I can't explain you why but I think it doesn't depend on trobalt.

 

[Lep]

Lep...Yes, I am confused too by your last post, as you said there that: Started at 100 mg/day for 3 days, then 100 mg every week until current dose. But if 45 days ago...That would be 3 days for initial loading dose of 300 mg...then 42 days = 6 weeks. So if jumping up 100 mg every week that would put you at maybe 300 + (100 x 5) = 800 mg total per week?!...Which I know is not the case.

So yes, some clarification would be great as am zeroing in on 600 mg tomorrow with very fast ramp up. Thanks!

Best, Zimichael

1st day:100 mg
2nd day 100 mg
3rd day 100 mg
4th day 100+ 100 until day 11
100 +100+100 from day 12 to day 19
100+200+100 from day 20 until today (another month)

 

[Zimichael]

how about ordering Retigabine compound and make your own pills ;-)
(scroll down a little bit to find Retigabine)

http://www.sigmaaldrich.com/life-science/cell-biology/cell-biology-products.html?TablePage=9551103

Here you can get a wide range of potassium channel modulators.
Nevertheless interesting to see what you can get there... if you are approved to buy there...

Tom...This has been covered already way back in the thread. All kinds of "Go where no man (woman) has gone before!" type stuff. It finally crashed and burned.

Best, Zimichael

 

[Zimichael]

1st day:100 mg
2nd day 100 mg
3rd day 100 mg
4th day 100+ 100 until day 11
100 +100+100 from day 12 to day 19
100+200+100 from day 20 until today (another month)

Thanks Lep...Now it is clear.

Incidentally, I hope the Trobalt is not making you lose weight otherwise you better strap a parachute to your back if you get caught in the wind somewhere.

Best, Zimichael

 

[Christian78]

NOW: I must admit that retigabine took me possibility to remember, but it is getting better. Bur retigabine gave me my life back, i can go out, gym, watch movies, go to city, socialize , love, ride bicycle, SLEEP with sleep white noise that i need and have used last 20 years ( i wake up easily and my ex white noise was too loud i made it so little now like 15 years ago). I have to say bad thing is when side effect stay like 2-3h (bit groggy), but I wake up with screeching sound now and i say ok, what a nice day out, lets take dosage or retigabine, and have a shower, and i got cosmetics because now I CARE ABOUT MY LOOK, have nice shower, then maybe I should go gym 1h, then i can make some nice meal, or go to city a bit, visit a friend, take a tea, well then the evening comes, i CANT RESIST not to go out, at least to by 4 apples. I lost 11 kg from 27th august.

Before: I dont care did i shower, important is i don't stink, i don't care how my hair look like, give me just some sport trousers that i have and wash one take other, don't talk to me, i talk not to you, i can not imagine to step out a door, just dont force me please to go out, there are some cousin came by (oh shit i have to go say hello! ( ) Just please let me take some benzo. I wake , uh one more day, why i did not die, i wanna kill my sell, one more horrible day of this hell of life, i take clothing on myself, i need to survive to 12:00 oh, I MUST EAT ( why, i move around i try and then it is 12, now survive to 18, uh, try to play online game, but if i play too much i get stressed t go up, don't eat hard food, be careful not to yawn because t goes up, be careful of cling by dishes or anything, never put a head on arm because it presses head and t goes up, uh it is 14, at 16 there are new on tv, takes me 30 minutes, it is 17, lets eat something sweet takes pleasure over tinnitus, get 15 kg in 2,5 months of severe t torture that i got in may, then there is 18, oh i survive, lets eat something, ant news go, and so on , tv show, there is 21:30, time to take old antihistamine, take benzo, take antidepressant and sleeping pill, turn on 2 noise devices and sleep. Now there will be sleep only nice time in day (now sleeping is nice but not something i LIKE . i like daytime!

Do you notice difference???

 

[TomKA]

Tom...This has been covered already way back in the thread. All kinds of "Go where no man (woman) has gone before!" type stuff. It finally crashed and burned.

Tried to read every page of this long thread, sorry for missing a post when this was stated before.
Anyway this was not meant too seriously - found it interesting... nothing more...

 

[Rube]

NOW: I must admit that retigabine took me possibility to remember, but it is getting better. Bur retigabine gave me my life back, i can go out, gym, watch movies, go to city, socialize , love, ride bicycle, SLEEP with sleep white noise that i need and have used last 20 years ( i wake up easily and my ex white noise was too loud i made it so little now like 15 years ago). I have to say bad thing is when side effect stay like 2-3h (bit groggy), but I wake up with screeching sound now and i say ok, what a nice day out, lets take dosage or retigabine, and have a shower, and i got cosmetics because now I CARE ABOUT MY LOOK, have nice shower, then maybe I should go gym 1h, then i can make some nice meal, or go to city a bit, visit a friend, take a tea, well then the evening comes, i CANT RESIST not to go out, at least to by 4 apples. I lost 11 kg from 27th august.

Before: I dont care did i shower, important is i don't stink, i don't care how my hair look like, give me just some sport trousers that i have and wash one take other, don't talk to me, i talk not to you, i can not imagine to step out a door, just dont force me please to go out, there are some cousin came by (oh shit i have to go say hello! ( ) Just please let me take some benzo. I wake , uh one more day, why i did not die, i wanna kill my sell, one more horrible day of this hell of life, i take clothing on myself, i need to survive to 12:00 oh, I MUST EAT ( why, i move around i try and then it is 12, now survive to 18, uh, try to play online game, but if i play too much i get stressed t go up, don't eat hard food, be careful not to yawn because t goes up, be careful of cling by dishes or anything, never put a head on arm because it presses head and t goes up, uh it is 14, at 16 there are new on tv, takes me 30 minutes, it is 17, lets eat something sweet takes pleasure over tinnitus, get 15 kg in 2,5 months of severe t torture that i got in may, then there is 18, oh i survive, lets eat something, ant news go, and so on , tv show, there is 21:30, time to take old antihistamine, take benzo, take antidepressant and sleeping pill, turn on 2 noise devices and sleep. Now there will be sleep only nice time in day (now sleeping is nice but not something i LIKE . i like daytime!

Do you notice difference???

So happy for you Christian. I'm glad you got your life back and you obviously sound much happier than you were. In that case I will say retigabine has been a success for you.

 

[sticky]

Great post Christian you sound uplifted

 

[Martin69]

NOW: I must admit that retigabine took me possibility to remember, but it is getting better. Bur retigabine gave me my life back, i can go out, gym, watch movies, go to city, socialize , love, ride bicycle, SLEEP with sleep white noise that i need and have used last 20 years ( i wake up easily and my ex white noise was too loud i made it so little now like 15 years ago). I have to say bad thing is when side effect stay like 2-3h (bit groggy), but I wake up with screeching sound now and i say ok, what a nice day out, lets take dosage or retigabine, and have a shower, and i got cosmetics because now I CARE ABOUT MY LOOK, have nice shower, then maybe I should go gym 1h, then i can make some nice meal, or go to city a bit, visit a friend, take a tea, well then the evening comes, i CANT RESIST not to go out, at least to by 4 apples. I lost 11 kg from 27th august.

Before: I dont care did i shower, important is i don't stink, i don't care how my hair look like, give me just some sport trousers that i have and wash one take other, don't talk to me, i talk not to you, i can not imagine to step out a door, just dont force me please to go out, there are some cousin came by (oh shit i have to go say hello! ( ) Just please let me take some benzo. I wake , uh one more day, why i did not die, i wanna kill my sell, one more horrible day of this hell of life, i take clothing on myself, i need to survive to 12:00 oh, I MUST EAT ( why, i move around i try and then it is 12, now survive to 18, uh, try to play online game, but if i play too much i get stressed t go up, don't eat hard food, be careful not to yawn because t goes up, be careful of cling by dishes or anything, never put a head on arm because it presses head and t goes up, uh it is 14, at 16 there are new on tv, takes me 30 minutes, it is 17, lets eat something sweet takes pleasure over tinnitus, get 15 kg in 2,5 months of severe t torture that i got in may, then there is 18, oh i survive, lets eat something, ant news go, and so on , tv show, there is 21:30, time to take old antihistamine, take benzo, take antidepressant and sleeping pill, turn on 2 noise devices and sleep. Now there will be sleep only nice time in day (now sleeping is nice but not something i LIKE . i like daytime!

Do you notice difference???

Glad for you.
So Trobalt decreased your T volume?

 

[Christian78]

Decreased volume, behave as antidepressant and i don't know, lift me up.

it is like living in building that has basement and 6 floors, and moving from -1 (no windows, cold dark) to 3-4 floor.

 

[Martin69]

Decreased volume, behave as antidepressant and i don't know, lift me up.

it is like living in building that has basement and 6 floors, and moving from -1 (no windows, cold dark) to 3-4 floor.

Sounds good. What dosage do you use currently and at what dosage you felt good effects?

 

[Robb]

Decreased volume, behave as antidepressant and i don't know, lift me up.

it is like living in building that has basement and 6 floors, and moving from -1 (no windows, cold dark) to 3-4 floor.

I am glad for you Christian. Please keep in touch with a doctor from time to time to monitor your health.
Such positive effects of this drug gives me great hope autifony will work well.

 

[SteveToHeal]

NOW: I must admit that retigabine took me possibility to remember, but it is getting better. Bur retigabine gave me my life back, i can go out, gym, watch movies, go to city, socialize , love, ride bicycle, SLEEP with sleep white noise that i need and have used last 20 years ( i wake up easily and my ex white noise was too loud i made it so little now like 15 years ago). I have to say bad thing is when side effect stay like 2-3h (bit groggy), but I wake up with screeching sound now and i say ok, what a nice day out, lets take dosage or retigabine, and have a shower, and i got cosmetics because now I CARE ABOUT MY LOOK, have nice shower, then maybe I should go gym 1h, then i can make some nice meal, or go to city a bit, visit a friend, take a tea, well then the evening comes, i CANT RESIST not to go out, at least to by 4 apples. I lost 11 kg from 27th august.

Before: I dont care did i shower, important is i don't stink, i don't care how my hair look like, give me just some sport trousers that i have and wash one take other, don't talk to me, i talk not to you, i can not imagine to step out a door, just dont force me please to go out, there are some cousin came by (oh shit i have to go say hello! ( ) Just please let me take some benzo. I wake , uh one more day, why i did not die, i wanna kill my sell, one more horrible day of this hell of life, i take clothing on myself, i need to survive to 12:00 oh, I MUST EAT ( why, i move around i try and then it is 12, now survive to 18, uh, try to play online game, but if i play too much i get stressed t go up, don't eat hard food, be careful not to yawn because t goes up, be careful of cling by dishes or anything, never put a head on arm because it presses head and t goes up, uh it is 14, at 16 there are new on tv, takes me 30 minutes, it is 17, lets eat something sweet takes pleasure over tinnitus, get 15 kg in 2,5 months of severe t torture that i got in may, then there is 18, oh i survive, lets eat something, ant news go, and so on , tv show, there is 21:30, time to take old antihistamine, take benzo, take antidepressant and sleeping pill, turn on 2 noise devices and sleep. Now there will be sleep only nice time in day (now sleeping is nice but not something i LIKE . i like daytime!

Do you notice difference???

Fantastic news Christian. I am happy you are starting to get your life back. That is is great news how you have persevered. Hopefully those side effects will diminish completely and you will be on the 6th floor soon!