It's hard to believe that it's been two years already since I tried my first anti-seizure medication. I only lasted six weeks on that first one, during which time I cried nearly every day and landed in the ER twice. I ended up having to come off of it when I developed a rash. It wasn't the Death Rash, but any rash with these meds is cause for discontinuing them.
When I last saw my neuro a few months ago we had talked about reducing my Keppra because it's the one that makes me depressed. However, I'm still having some partials (0-5/month) so before we can reduce it we have to increase something else. So as of today we're trying something new: Lamotrigine.
But this is another one that can cause the Death Rash, so I have to start it very gradually. It will take 8 weeks to get up to therapeutic dose. In the meantime I will stay on all three meds (!) and then as long as I don't develop a rash or any other major issues, I can start to decrease the Keppra until it's gone.
The ultimate goal, he said today, is to eventually only be on one med. Though I personally would be ok with staying on two as long as they're working and not making me miserable.
I asked him today whether it's reasonable to aim for zero partials altogether, or whether I will always have a few here and there. He said it's reasonable to aim for zero, so that's good news.
I also mentioned that I had been thinking back to some of the thoughts, experiences, and things that were happening before the meds were working... some of the more interesting experiences and weird things that were going on in my brain. I kind of miss them, only because they were rather fascinating (not that I want them back). Of course I don't want to go back to having seizures (and he said good, because the seizures aren't good for me!) but at the same time some of the things that were popping up--like the early childhood memories--were pretty interesting, and have stopped now since the meds are working. But that is the trade-off, I suppose.
Wish me luck with the new med--no rashes and no bad side effects! He said it is "well tolerated", but he says that about all of the ones that we try.
