My Epileptologist finally took me off of that horrible Phenobarbital (product name "Lethyl"). I am now on 5mg Urbanol twice daily. It is working brilliantly, but apparently it shouldn't be used for more than 8-12 weeks 😳. Does anyone have experience in this arena?
I've been on clonazepam (Klonopin) for . . . gah, at least a decade. Benzos seem to be the only thing that semi-control my absence seizures. Thing is, now I'm up to 1 mg 3x/day, with .5 mg orally dissolving tabs for when the clusters get really bad. That's the problem. With benzos, you develop a tolerance and have to take more and more. But it's not like they cause your uterus to fall out (at least, they haven't yet). It's just that the medical establishment doesn't like putting patients on drugs that they're going to develop tolerance to. Especially when mild euphoria is a side effect, so they've got potential street value. I'm not familiar with Urbanol, and who knows how it'll affect you. But 8-12 weeks is just keep-our-asses-covered-BS. Maybe you've an addictive personality, and you're already hooked. For me, after alllllll these years, it's the reverse--I don't feel many of the sedating/slightly euphoric/anti-anxiety properties of Klonopin at this point. I am hooked to the idea that the little guys might stop a seizure cluster or prevent a GTCS. I get nervous when I'm low b/c I don't want to end up thrashing on the floor. But that's no different from any other drug I take. Good luck, darlin'! I hope it keeps working for you.
Thanks Lisa. I haven't noticed any feelings of happiness, never mind euphoria lol. What I do know is that I haven't ended up in the ER in a month and that's pretty damn awesome!
U must be very happy