Retigabine (Trobalt, Potiga) — General Discussion

I'm sorry to hear that. Hope it's not permanent and you get better soon.
But you have to realize that everyone responds different to this drug. I've taken it, in the higher doses, only got some temporary relief. No lasting side effects.
Starting trobalt is a very personal decision, one has to fully understand the risks.
But, as I understand, it's being pulled from the market so hopefully something safer comes along.

 

Hmm. It was certainly nice to have something out there that could potentially cure it, even though it might have been out of reach most likely. Just knowing it was there helped me stay positive through the worst of it while I worked to figure out what was going on.

Having still not read this whole thread, nor all the stories of the crazy bad side effect (I only knew of the blue skin and vague potential for eye problems until a few days ago), despite that, I still recognized that it's possible that you could "cure" something the wrong way.

I mean, one problem we're having is that we're all dealing with a symptom of some very different issues. You could have tinnitus because of a brain tumor, lesion, or a poor diet with too much salt, messed up gut bacteria, physical damage, whatever. Even if Trobalt worked you wouldn't be solving the real issue, just masking it. And you'd still have to deal with the long-term repercussions of that problem, along with whatever the drug itself might do.

And no doubt that's the case because everyone's problem is potentially different. Imagine a guy who just needs to cut back on his salt intake, but doesn't realize it yet. He has tinnitus pretty bad, and learns about this miracle drug. ENTs, basically clueless when it comes to dealing with tinnitus decide to prescribe it at the suggestion of their patient.

Trobalt, a hard core and somewhat experimental mind altering medication intended to stop seizures in people - people with brains that are very different - no way this ends well. The poor guy is going to lose his eyesight and only realize later that he just needed to avoid eating fast food.

That really sucks! I hope there's some studies done on these people, because the result is so weird it might help scientists understand how the brain works.

(And about salt... want an eye opener? look at the health information for common things like pizza or hamburgers, especially if they're prepackaged or fast food. I'm talking multiple days worth of sodium in single meals... it's no wonder why everyone has high blood pressure. It's no wonder to me now why my left ear joined my right in the eternal chorus of ringing. We Americans are really hurting ourselves here, and most are none the wiser.)

 

I lament the reasons Ill people take chances on meds because THERE ARENT ANY FOR 50,000.000 acute and 25,000.000 chronic sufferers. But we have 180 military bases all over the world! Fascism or Democracy you make the call.

 

I can't get access to Trobalt in Canada...is there anyone on here from Canada that was able to perhaps get Trobalt in the USA and where did they go to get it??...also are there any countries where it might be relatively easy to get trobalt??.. and i might add i would be willing to travel to any country to try it for 2-3 months with the hopes of some improvement in my tinnitus that is currently at 10/10 most of the time.TIA.

 

Try Belgium and some pharmacy online with prescription.

 

The problem is i doubt any Canadian doctor would give me a prescription as its not available in Canada,if i was to fly to Belgium is a prescription needed by a doctor from there or can one just go to any pharmacy?TIA

 

I understand. I read here in this Forum that was possible to buy them without prescription. Please do your searching here with more details...

 

people talking about Spain

 

The drug has been taken off market as far as i can tell.

 

Not yet.... next year?

 

I have a few boxes ...If i ever need to poison someone.

 

RaZaH: I'm interested.

 

I would be interested as well RazaH.TIA

 

Not sure why you would be interested ? This stuff only worked temporarily for me and had a negative effect on my eyesight , why would you want to play with that ? Besides I only have the 100 or 200 mg (not sure) and i dont think its advisable to start at such a large dosage.

Also , personally I feel that this shit really fucks with your brain.

 

Might tinnitus is so bad i would be willing to take the risk of taking trobalt even though there is risk of side effects.

 

In ATOS's success thread you said:

Did that improvement last? Were there any lasting side effects to your eyesight?

 

My "improvement" did not last , however my eyesight problems are still here.

 

We are now 4 people who got permanent eyesight problems, some very severe. Please don't take the risk. You have no idea how it is to live with tinnitus AND eyesight problems. You will pray to the gods to ONLY have tinnitus. Take my word for it.

 

Sorry to hear that.

It's strange (and kind of scary) that some people don't notice the eye problems until after discontinuing the drug.
Do you get floaters or black spots?

 

Floaters and black spots , is there a difference ? I have floating black spots.
That is not the main problem I have though , I feel like my eyesight just got considerably worse.

 

If i were to go to SPAIN to get trobalt would i need a precription from a doctor there or can i just go into a pharmacy and buy it???... or is it easier to get it in the USA as i live in CANADA and could travel down to the states???....also could someone inbox me a doctor in the USA that is ok with prescribing trobalt ....my T is at a 10/10 most of the time and i would really like to try trobalt despite the side effects...Thanks to anyone that can answer my questions and i would really appreciate some help in getting trobalt as unfortunately its not available in Canada and it saying that if anyone from Canada has been able to obtain trobalt in the USA it would be a big help as to how you were able to attain it....i am willing to fly to SPAIN if the odds are really good in getting trobalt.

 

If you wanna try one box I could send it to you, one box is 100mg x 84 pills. Our farmacy here for some reason say it dont has it at the moment but i have trobal home.

 

Hey Patric nice guy, what eye problems do you have... I had floater before i have them now, nothing changed there... but what is that you got? Chris


ME who is most sensitive to medicine and drugs, who get drun of hald glas of vine or nock out by 1/2 pill of 15mg mitrazapine for 3 days lol strange i did not react to trobalt so violently. I did had kidney stones, as my mom had it and i had it before... but i had floater before as chiled wondered why my eyes were "dirty" when glases are clean and why it looks like i look at bacteria under microscope, and they slide and run away when i try to look at them... so i knew at 7th year i had them...

Tell me Patric, what happen to you as I would like to know. They will be discontinued i suppose trobalt and so doc gave me 420 boxes of trobalt prescribed. (but pharmacy said they have problem now for some reason to deliver, I suppose I will have to call the GSK in Sweden and report there is no trobalt left and they will reorder new supply for Sweden, btw they changed look of a box for trobalt now)

 

Hi guys,

Is any one taking Trobalt at the moment?

 

I am 47 now and in the past year I have lost some of my eyesight. It was very sharp before and I never had problems. Maybe it is just aging, but I think it comes more from the constant coping with severe T, depression and anxiety. If I have a mild day, my vision is also much better. I doubt this comes from Trobalt since I take only 200 mg every 10-14 days.

BTW, getting Trobalt is also difficult now in Spain. My friend brought me another box, but it is no longer walking into any pharmacy and buy it. You need to know a doctor, he had to do some phone calls etc. So it will go away from the market.

 

Trobalt will go of the market mid 2017. Just hope they replace it with something with less side effects.

 

hi all,

i have not been on the forum for awhile, just wanted to check in. as some of you may know i was one of the first trail-ees of the drug, well documented in this thread. as an update, i am doing fine with my t. i have had no long-term issues with RTG, and it has been 2 years since i stopped my 2 month trial. my hyperacusis is still gone, in my view largely because of RTG (or perhaps it sped up what would have been a more gradual process?). i'd say the overall level of my t has either stayed the same or has slightly gone down. i don't monitor it or register it much anymore. my t bothers me less and less as the months/years go by, and i attribute this to just getting used to it and being indifferent to it.

it seems that RTG is being discontinued, but i am pretty confident that something similar yet better is just down the road. i hope all are getting on with their life, and for those that are suffering i am hopeful and optimistic that good medical advances are around the corner.

-locoyeti

 

locoyeti,

Wat was the cause of your T?
could you tell how much trobalt you took during your 2 months trial?
Dit your T go down during your trial?

-zwaluw-

 

I'm glad it worked for you. For those who are waiting for a medical solution, the outlook seems pretty grim right now. It would take years for the novel SF0034 or RL648_81 to hit the market.

 

There's a reason this drug was taken of the market. It's to damm dangerous !!!