Retigabine (Trobalt, Potiga) — General Discussion

[SteveToHeal]

They did it for HIV
http://science.howstuffworks.com/life/cellular-microscopic/video-game-cure-hiv.htm

Wow - great story. Set a bunch of video game players loose in a virtual foldathon and they will find the solution to a monkey virus. That's amazing. That's crowd sourcing a medical solution for you. Now get them to find one for T !!!

 

[Hudson]

Anyone who is receiving this treatment, @Mpt, @Christian78 , etc. how are you all doing today?

 

[Mpt]

Anyone who is receiving this treatment, @Mpt, @Christian78 , etc. how are you all doing today?

About the same-- I don't hear it 99% of the time even if I try.. I could hear it fainly right after the car ride into work this morning for a few minutes-- but I can't hear it now even when trying

 

[Christian78]

Anyone who is receiving this treatment, @Mpt, @Christian78 , etc. how are you all doing today?

failed

 

[Martin69]

failed

Christian, thanks for trying and sharing your experience with us.
I am sorry that it failed. We all had and still have hope in this.
And I hope that others who get acces to this drug will continue to try.

 

[locoyeti]

failed

@Christian78 , are you still continuing the trobalt medication? Are you gradually increasing the dosage as @benryu suggested? What dosage per day are you on now currently? I read in one of the epilepsy forums that there are a lot of changes in symptoms during the dosage increases, but that once you hit the recommended dose of 900mg you should start to see results. I think it will just take a bit more time.

 

[Christian78]

@Christian78 , are you still continuing the trobalt medication? Are you gradually increasing the dosage as @benryu suggested? What dosage per day are you on now currently? I read in one of the epilepsy forums that there are a lot of changes in symptoms during the dosage increases, but that once you hit the recommended dose of 900mg you should start to see results. I think it will just take a bit more time.

i am decreasing medication...

but When i get to Sweden i will ask for repetition and course of 3 months and do it slowly as benryu said

 

[Christian78]

Christian, thanks for trying and sharing your experience with us.
I am sorry that it failed. We all had and still have hope in this.
And I hope that others who get acces to this drug will continue to try.

Mpt told me 3 days at 100, 3 days at 200 and then 300, i think it is not corect so that was failiuere, why did i felt ok on start and then worse on higher dosage, i will try in sweden slowwww as benryu said...

 

[rtwombly]

Well, I'm back from the neurologist and no Potiga for me. Both the PA and the Dr said they were stepping back from Potiga for any use, due to bad experiences from patients and a lack of results. They recommended ALA and gave me a prescription for Diomax, a diuretic. ALA is about the only antioxidant I haven't tried, so I'll give it a go. The Doc said he thought they had Potiga samples they could give me if these interventions don't help, so I may go back.

 

[Christian_B]

All this sounds very interesting, i've read all 18 pages of posts.

Tho i find the last pages a bit saddening.. especially Christian's story, which failed.. maybe because it was taken in wrong doses, who knows...

My T is very new so i would not jump into this, even tho i know that i can get this in Denmark.

 

[benryu]

All this sounds very interesting, i've read all 18 pages of posts.

Tho i find the last pages a bit saddening.. especially Christian's story, which failed.. maybe because it was taken in wrong doses, who knows...

My T is very new so i would not jump into this, even tho i know that i can get this in Denmark.

To be honnest it's too early to make any assessment at the moment. No offence but Christian's dosage is very bad and he had too much too fast. And it's totally expected that there is no effect with such an aggressive dosage increase.

Let's not forget 3 important points:
-Retigabine is not a miracle drug, time is a very important factor and my neuro told me not to expect results before several weeks.
- Dosage is even more important, and it should be super gradual. Too much too fast will have no effect and it could worsen temporaly T. !!! It's a bad idea !!!. A 150 mg increase every 7 days is the max, a peak at 600 mg or less is more that enough for most of us. Then gradual decrease.
- Retigabine acts more on the interspike interval and has only a limited effect on the repolarization. In other words, it's candidate for T. stabilization and also decrease to a certain extent, but AUT00063 will be much much better. (on the paper)

This is a recommended dosage:

 

[dan]

Funny story, actually at some point in my life I considered going more on the medical side of research. I have worked a lot with those guys. But I decided to use my data science & research skills in the video game industry. haha

Waste of good talent.

 

[Hudson]

Waste of good talent.

You'd be surprised, but there are not a lot of opportunities to pursue research into specific medical fields. I don't fault him in any way.

 

[Grace]

To be honnest it's too early to make any assessment at the moment. No offence but Christian's dosage is very bad and he had too much too fast. And it's totally expected that there is no effect with such an aggressive dosage increase.

Let's not forget 3 important points:
-Retigabine is not a miracle drug, time is a very important factor and my neuro told me not to expect results before several weeks.
- Dosage is even more important, and it should be super gradual. Too much too fast will have no effect and it could worsen temporaly T. !!! It's a bad idea !!!. A 150 mg increase every 7 days is the max, a peak at 600 mg or less is more that enough for most of us. Then gradual decrease.
- Retigabine acts more on the interspike interval and has only a limited effect on the repolarization. In other words, it's candidate for T. stabilization and also decrease to a certain extent, but AUT00063 will be much much better. (on the paper)

This is a recommended dosage:
View attachment 2462

And just cause retigabine doesnt (if it doesnt) work on some of those who try it to its full potential following specific guidelines doesnt mean that aut00063 wont work either cause like you said there similar but very different and autifonys drug is basically the specific one targetting the channels that go along with T.----- your so smart!!

 

[Matteo Piatti]

But also the fact for even a short while, it worked, it's a great news... I guess @benryu is right about the dosage.

 

[Grace]

Yeah any effect for the better is good news!!! Just means it did something to his T and proof that nothing can be done.. And if it doesnt work fully on him then thats okay cause maybe his T didnt respond to it and needs something more specific to crack it like aut00063.

 

[Telis]

Worked for short while or placebo to start?

But also the fact for even a short while, it worked, it's a great news... I guess @benryu is right about the dosage.

 

[Matteo Piatti]

He said that it almost disappeared after one week... That must be a biiiiiig placebo.... I guess

 

[Telis]

He said that it almost disappeared after one week... That must be a biiiiiig placebo.... I guess

What!? Where are you getting this from?

He said 30-45 percent reduction...that's a far stretch from almost disappeared.

 

[Matteo Piatti]

Sorry, I might have confuse with Mpt, apologize

 

[Telis]

No worries man

Sorry, I might have confuse with Mpt, apologize

 

[EddyLee]

Worked for short while or placebo to start?

I would guess that it work for Christian for the first few doses instead of placebo and then our brain's self correcting mechanism resisted the drug effect. So we need a stronger and more targeted drug to fool our brain like autiphony's

 

[locoyeti]

I would guess that it work for Christian for the first few doses instead of placebo and then our brain's self correcting mechanism resisted the drug effect. So we need a stronger and more targeted drug to fool our brain like autiphony's

i gotta say, there's a lot of jumping to conclusions here. we have 3 people so far. one is cured. another has massive improvement with just 100mg a night. and the third has only been on it for less than 2 weeks and has had mixed results on an unorthodox dosing schedule. we definitely need more people trying it out and more time. and more patience. my two cents.

 

[Matteo Piatti]

I think that is the greatest result we have seen so far in this group...

 

[Zimichael]

Brief notes here as helluva day:

1. @benryu ...my docs' assistant sent me & this right in your neck of the woods! Prices look really good!

http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

Ezogabine - also known as Trobalt (Retigabine)

ProductManufacturerDosageQtyPrice(USD)

Potiga Known as Trobalt outside the USGSK50 mg84$148.00

Potiga Known as Trobalt outside the USGSK100 mg84$149.00

Potiga Known as Trobalt outside the USGSK200 mg84$269.00

Potiga Known as Trobalt outside the USGSK300 mg84$359.00

2. Reason doc sent me this is my source price at CVS failed! Please note anyone following up on those posts of mine.
When it came down to it there were two issues. First was pharmacist was not happy with doling out 400 mg pills when instructions to them are START SLOW at 50 mg max (I presume TID) for 1 week...Note ref. Christian!!! However, I got my docs office (great assistant!) to muscle them into saying OK..."as the pills have to be cut anyway if tapering up even slower than recommended which patient is going to do, so what's the big deal?!"
Second was the pricing was wrong, due to simple fact that it was only right for a minimum bulk quantity...Oooops! So unless three other people wanted it too they would not sell 30 pills and would only do a "90 pack". They would only do 30's of a faster moving drug and this is certainly not one!...This little fact only came out once the order went in as the 'scrip was there and done. Thus the price suddenly jumped up to near $950 instead of what it was before at $280 for 30 pills!......Whoa, too much for me as a trial thank you! Especially as I can react badly to some meds when others just breeze through them.
So I am not going to be a trialee until I can sort this out. Sorry all, but will pick all this up again when come back from the mountains anyway, and that has been pushed back a bit due to tooth extraction etc. too... My doc will do a scrip for the Canada Pharmacy above in fact.

Kind of a crappy week!

OK I'm wasted but wanted to get this on the thread.

Best, Zimichael

 

[benryu]

Brief notes here as helluva day:

1. @benryu ...my docs' assistant sent me & this right in your neck of the woods! Prices look really good!

http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

Ezogabine - also known as Trobalt (Retigabine)

ProductManufacturerDosageQtyPrice(USD)

Potiga Known as Trobalt outside the USGSK50 mg84$148.00

Potiga Known as Trobalt outside the USGSK100 mg84$149.00

Potiga Known as Trobalt outside the USGSK200 mg84$269.00

Potiga Known as Trobalt outside the USGSK300 mg84$359.00

2. Reason doc sent me this is my source price at CVS failed! Please note anyone following up on those posts of mine.
When it came down to it there were two issues. First was pharmacist was not happy with doling out 400 mg pills when instructions to them are START SLOW at 50 mg max (I presume TID) for 1 week...Note ref. Christian!!! However, I got my docs office (great assistant!) to muscle them into saying OK..."as the pills have to be cut anyway if tapering up even slower than recommended which patient is going to do, so what's the big deal?!"
Second was the pricing was wrong, due to simple fact that it was only right for a minimum bulk quantity...Oooops! So unless three other people wanted it too they would not sell 30 pills and would only do a "90 pack". They would only do 30's of a faster moving drug and this is certainly not one!...This little fact only came out once the order went in as the 'scrip was there and done. Thus the price suddenly jumped up to near $950 instead of what it was before at $280 for 30 pills!......Whoa, too much for me as a trial thank you! Especially as I can react badly to some meds when others just breeze through them.
So I am not going to be a trialee until I can sort this out. Sorry all, but will pick all this up again when come back from the mountains anyway, and that has been pushed back a bit due to tooth extraction etc. too... My doc will do a scrip for the Canada Pharmacy above in fact.

Kind of a crappy week!

OK I'm wasted but wanted to get this on the thread.

Best, Zimichael

Great information ! Thanks a lot !!
However I am going to get the drug in Europe, it's MUCH MUCH cheaper. In France it costs $260 (16 weeks treatment), and with the insurance I will pay like $90. My mother in law is on holiday there.

She is going to bring me back what I need, if she can pass the customs I will get my drug.
If she fails to pass the customs she will get arrested, and I will get rid of her !

Winner - Winner situation

I guess T. has its perks

 

[Matteo Piatti]

Ok friends... Do you belive in fate?
Today i was Hiking in Lantau (Hong Kong) and going throw an old village , an old lady stopped me speaking to me in Cantonese, she looked concerned and she have me a basket of Bananas... I told her in my super basic Mandarin that I wasn't hungry and i couldn't accept them... She was so stubborn that I had to take them... But at least i gave her 20 HKD for it... Bananas are famous for potassium!!! And called me back the potassium modulator Retigabine!
Ok I'm not serious, but i want to belive it's a sign!

 

[Telis]

Great information ! Thanks a lot !!
However I am going to get the drug in Europe, it's MUCH MUCH cheaper. In France it costs $260 (16 weeks treatment), and with the insurance I will pay like $90. My mother in law is on holiday there.

She is going to bring me back what I need, if she can pass the customs I will get my drug.
If she fails to pass the customs she will get arrested, and I will get rid of her !

Winner - Winner situation

I guess T. has its perks

That's great man...can't wait to see how this works for you...I know for sure we will get a accurate detailed analysis from you!

 

[Viking]

Dear friends: I have bad news for me and I do not know what to do. Yesterday, while I was happy for almost silence, I began to get a bit of burning in the bladder and urinary hesitancy. Tonight, the problem has become more serious because I feel a slight twinge behind his back to the right side at the level of the kidney. This morning I did not take Trobalt because I had read that among the most common side effects, there are just these. I do not know what to do. I'm really very sorry.

 

[EddyLee]

Hi Viking, i think it's better to go for a check at nearby hospital asap. Best to rule out any serious complication first. Worrying about your condition might make your T worse too.

Wish you all well friend.

Dear friends: I have bad news for me and I do not know what to do. Yesterday, while I was happy for almost silence, I began to get a bit of burning in the bladder and urinary hesitancy. Tonight, the problem has become more serious because I feel a slight twinge behind his back to the right side at the level of the kidney. This morning I did not take Trobalt because I had read that among the most common side effects, there are just these. I do not know what to do. I'm really very sorry.