Retigabine (Trobalt, Potiga) — General Discussion

[Philemon]

hey Philemon,

Check this thread here ; https://www.tinnitustalk.com/threads/prof-tzounopoulos-university-of-pittsburgh.8280/#post-97928 I posted some videos and I think you`ll have some info you look for.

And great to hear your results form Trobalt! ... This dug is really revolutionsing Tinnitus history ... specially the pioneers trying it out ... I`ll be starting soon, have to wait a bit more untill I see my neurologist on the 18th ... that will be my starting date!

Thanks for the links, I hope they'll be able to move fast toward human clinical trials !
I wish you'll also good relief with trobalt ;-)

 

[valeri]

@RaZaH

If you don't mind me asking few question regarding your user experience post:

1. How often you use RTG? Eg every time you experience spike or just when really bad?
2. What is the efficiency of RTG used occasionally in your particular case?
Does it work every single time and for how long?

Thanks!

Good to hear you're moving forward, wishing you more silent days ahead

 

[RaZaH]

Hi @valeri

1. Maybe once every two weeks at this point , was more frequent , twice a week maybe.
I do "need" it much more often then that , but I dont like drugs so I try as hard as I can not to pop one.

2. Very efficient .

It seems to work every time , works for a few hours.

Like everything T related its hard to pin down cause and effect , variations all over the place etc.
What this approach seems to have done for me is that I have sort of learned that T might be bad right now but it will be a bit better in a few minutes , hours or the next day . I have sort of taken my mind to evaluate , " Should I take one , is it bad enough for me to need one ? Should I wait just a couple of minutes and see if the worst passes, which it seems to do ... so I postpone taking a tablet for a bit , which turns into hours and then days.

My brain seems to be learning that the worst does pass if I just go on with my day , and I end up not taking a pill.
I guess thats some sort of habituation?

I would at least say that Retagabine has helped me habituate.
I am sure we all know the feeling of loss of control over our life , RET has helped tremendously for that .

 

[undecided]

Hi @valeri

1. Maybe once every two weeks at this point , was more frequent , twice a week maybe.
I do "need" it much more often then that , but I dont like drugs so I try as hard as I can not to pop one.

2. Very efficient .

It seems to work every time , works for a few hours.

Like everything T related its hard to pin down cause and effect , variations all over the place etc.
What this approach seems to have done for me is that I have sort of learned that T might be bad right now but it will be a bit better in a few minutes , hours or the next day . I have sort of taken my mind to evaluate , " Should I take one , is it bad enough for me to need one ? Should I wait just a couple of minutes and see if the worst passes, which it seems to do ... so I postpone taking a tablet for a bit , which turns into hours and then days.

My brain seems to be learning that the worst does pass if I just go on with my day , and I end up not taking a pill.
I guess thats some sort of habituation?

I would at least say that Retagabine has helped me habituate.
I am sure we all know the feeling of loss of control over our life , RET has helped tremendously for that .

I would agree 100%.
Just knowing that relief can be obtained at any time is a huge deal.

 

[valeri]

I would agree 100%.
Just knowing that relief can be obtained at any time is a huge deal.

Agree with you!
There is a huge mental component in all this but there's big difference between "nothing can be done" and " yes there's a pill I can take and it will get better"
That's what we need in terms of treatment if impossible to cure

 

[Thongjy]

if anyone is wondering I am taking 300 mg three times a day

Do you experience any side effects from taking Retigabine?
You are still taking it now?

 

[lapidus]

Do you experience any side effects from taking Retigabine?
You are still taking it now?

No, he is not taking it anymore. And he is still T free with no side effects, hence why he isnt on the forum any more.

 

[Juan Carlos]

My neurologist prescribed Potiga. I have had good luck with tegretol so he agreed to let me try it. I have an ENT but he is not near as knowledgable or as helpful as my neuro.

Hi! i finished with Trobalt, so now considering Tegretol. How was your experience? do u recommand it?
its true that it can raise H?

 

[1MW]

Where i can buy from europe online RTG with prescription in electronic form ?
Please can anyone answer me i have asked several times and seems RTG does not exist anywhere.
Italy france poland or other countries have online pharmacies that accept prescriptions in electronic form ?

 

[valeri]

Where i can buy from europe online RTG with prescription in electronic form ?
Please can anyone answer me i have asked several times and seems RTG does not exist anywhere.
Italy france poland or other countries have online pharmacies that accept prescriptions in electronic form ?

I've asked few members on this board but they couldn't even bother to reply!
So much for human compassion let alone willingness to help!
Shame

 

[Martin69]

Where i can buy from europe online RTG with prescription in electronic form ?
Please can anyone answer me i have asked several times and seems RTG does not exist anywhere.
Italy france poland or other countries have online pharmacies that accept prescriptions in electronic form ?

One user gave me this link where he ordered Trobalt: http://www.ludwigsapo.de/leistungen/int_apo.html
They import from 30 countries, but I guess only to Germany.

 

[Rog]

@1MW @valeri check this link they ship worldwide http://www.pharmacychecker.com/online-pharmacy-ratings.asp

 

[Mo_Mo]

@Danny Boy are you still on RTG?

 

[Danny Boy]

@Danny Boy are you still on RTG?

Yep. My dose has changed to 1200 once a day to see if that does anything.

 

[grandfunk1]

@Danny Boy How effectual has it been for you?

 

[Danny Boy]

@Danny Boy How effectual has it been for you?

Very

 

[Mo_Mo]

Very

Any additional reduction of the intensity of T, and when are you planning to tapper down? Has it been 3 months since you started the 1200 dosage

 

[Danny Boy]

Not at first.

 

[Christian78]

I hear there is someone dealing trobalt, can someone tell me what price. In Sweden it is 52 euro for 100mg box?

And please be open about it

 

[dan]

In Sweden , you need a prescription too.

 

[nills]

Not at first.

come`n man, give a bit more info please ... hwat is it doing for you ... would you use the word `silence` in your experience? has there been a constant reduction or does it go in phases and hours ... or is reduction going steadily lower and lower? ... not so much interested in side effects just how you are experiencing life and T and Trobalt together ... I find it strange actually that only Mpt has experessed something like `best days of my life` and ` feel like I got a second chance` ... no other Retigabine user has experessed his gratefullness the same way so I wonder if the eefect for them is the same or much less ... ? thank you for answering buddy.

 

[Danny Boy]

come`n man, give a bit more info please ... hwat is it doing for you ... would you use the word `silence` in your experience? has there been a constant reduction or does it go in phases and hours ... or is reduction going steadily lower and lower? ... not so much interested in side effects just how you are experiencing life and T and Trobalt together ... I find it strange actually that only Mpt has experessed something like `best days of my life` and ` feel like I got a second chance` ... no other Retigabine user has experessed his gratefullness the same way so I wonder if the eefect for them is the same or much less ... ? thank you for answering buddy.

I wouldn't say silence as it is still there, but at a much, much lower volume. When I wake up it's kind of louder, but gets lower throughout the day. I don't know if trobalt has only a temporary effect or not...But if Autifony's drug produces similar results or better then it's good times for tinnitus as it will no longer control our lives. But I will say, this drug is dangerous, it can cause blindness, blue pigmentation of the skin and potential kidney failure. I would say, if this effect is temporary then it may not be worth going on, I'd wait for Autifony, as it'll be much, much safer. Lets just pray that the drug gets fast-tracked.

 

[Karl28]

Where can I get retigabine in Australia?

 

[Christian78]

well i think it lowers t, but not totaly... it helps...i hope

Where can I get retigabine in Australia?

you can not, there is some copy powder from china but i dont beleave it

I wouldn't say silence as it is still there, but at a much, much lower volume. When I wake up it's kind of louder, but gets lower throughout the day. I don't know if trobalt has only a temporary effect or not...But if Autifony's drug produces similar results or better then it's good times for tinnitus as it will no longer control our lives. But I will say, this drug is dangerous, it can cause blindness, blue pigmentation of the skin and potential kidney failure. I would say, if this effect is temporary then it may not be worth going on, I'd wait for Autifony, as it'll be much, much safer. Lets just pray that the drug gets fast-tracked.

there is same thing in greece thay preoduce something based on trobalt becouse they know it works on tinnitus and they are doing it i read somewhere

 

[1MW]

My Blood Urea Nitrogen was 17mg/dl and creatinine 1.1mg/dl
after some pills trobalt blood urea nitrogen 65mg/dl and creatinine 1.3mg/dl
So to me trobalt is dangerous for renal function

 

[undecided]

It says on the product leaflet that trobalt may affect the results of urine and blood tests.
Now I don't know if that's a good or a bad thing, just thought I'd mention it.

 

[Christian78]

i will repost i wonder what you think? I think those activist from animal protection made it impossible to test on monkeys chimpanzee who is just 2% genetically different from us. they should test medicine on mouses and then monkeys to find cure, we are not same as rats and seems that autifony fork perfect on mouse but not on humans. We need to thank to animal activist that they cant test on moneys. Am I wrong?

http://en.wikipedia.org/wiki/Animal_testing_on_non-human_primates#Chimpanzees_in_the_U.S.

 

[Twitch]

I have to agree with you there Christian78. @dan makes a very valid point in the thread below:

https://www.tinnitustalk.com/threads/tinnitus-habituation-logic.7584/

 

[chase.j]

@Mpt is there a way to contact you. I had some questions about your discovery. What caused your tinnitus, mine was acoustic trauma "gun shot" I have had it for 50 days and I have had great results from vinpocetine and I am considering the AM 101 trials but not too sure now from some of the things I have read.

 

[Christian78]

I have been using Trobalt from August 2014, and stopped because I stay without and then restarted 10 September. I been using it and my condition improved severely and I was great but somewhere at start of december i noticed tinnitus is coming back. I fought continuously.

I got tinnitus on my birthday 30 Aug 2013. It was hard but i got used to it, then i got Lyrica and it got 200% worse in May 2014. I thought i will die but Trobalt came. He gave me sleep that I am grateful him for it. After it lost initial effect i got advice to restart and try and i did but i got severious side effects. Anyway my doctor gave injection of Betamethasone (corticosteroid) for pains and in morning i woke up with new tinnitus, much worse, this i can't stand.

What is important that on this site TT I made several friends. @Viking is really special person who is so so so devoted and fighting for his life as hard as he can, very God fearing and good person... When I got tinnitus I was on one skype chat group with some friend of whom i love most @Rhea. There I met @inadmin who are my friend until today. When I joined TT forum I get to know @amandine and @Danny Boy who are all my good friends.

Anyway, price of Trobalt in pharmacy in Sweden, Serbia and Croatia and Spain is:

25mg is 25€
100mg is 50 €
200mg is 100 €