I'll try not to ramble (which I tend to do :( ) but I'm...Freaking out a little bit and need some advice please...Short back history, developed TN in 2011 (I was only 27 :( ) and I've so far been through these medications;
Tegretol (didn't help)
Norpress (helped for around 4 months)
Lamotrigine (didn't help)
Then moved to Gabapentin (Godsend) which worked fantastically on it's own for around 16 months, although over that time the dose got gradually bigger. Then Baclofen was added and the two together worked pretty well for a further 6ish months, (although the doctor added Effexor-XR in there for the bits of break through pain but it did nothing to help) and then finally we added in Topamax.
My current dose is;
Gabapentin - 3200mg
Baclofen - 60mg
Topamax - 25mg (it's the most piddling dose but it's worked well believe it or not, yet is still enough (don't understand WHY) to give me a horrendous amount of side effects.
Of everything I've ever tried, Topamax is the WORST. We're talking 20+ side effects, but even cumulatively they aren't worse than the pain so I just cope and I'm grateful to be pain free bar the odd twinge or flash. Until recently, where a side effect has popped up that's just...Not on my list of being able to cope.
It's made me start sleep walking. And I'm terrified of harming my mother whom I live with, or myself...I've already proved I have the potential to do this as during one episode, I apparently tried to give myself a dose of Gabapentin by pouring the bottle to my mouth rather than shaking out a single pill. It's only the fact the gel caps (4 of them) got caught on the moisture on my lip and that 'wrong' sensation woke me up somehow that stopped me. That TERRIFIED me. I also seem to like taking all my clothes off during episodes. *blush* Also sleep talking, holding entire conversations but then becoming very agitated coming out of it because I'm so confused :(
So although the Topamax IS helping, and I'm frightened to do it, I want to stop taking it because the alternative scares me more. The advice/opinions/help I need though please is....What could I try in it's place?
I live in New Zealand so not everything is available here, and some that are, aren't funded and beyond what we could afford. Lyrica, for example, would be around $150 (minimum, from what the doctor suggested) a fortnight.
Has anyone tried Zonegran? Supposedly it's like Topamax? Is it as good/have the same bad side effects? I don't even know if it's available here but from what I've tried to investigate, it seems like it might be the most logical replacement for the Topamax....Provided it too doesn't cause sleep walking.
Surgical options are not really available to me, and I have a constant fear/anxiety in the back of my mind because I have this for life and I'm already running out of medications...
Any help would be very greatly appreciated.
....Sorry for rambling anyway.