An email from a regular reader (hi, K!) after my last post, an entry that had nothing to do with the dysfunctional world of my neurons, reminded me that an update on the epilepsy front was long overdue. I blame my silence in this regard on a few factors: perhaps most importantly, “epilepsy fatigue” has set in as of late, both in the literal “I’m tired” sense and in the “I’ve been finding it hard to cope with emotions regarding possible surgery” one. And, of course, I haven’t felt like I’ve had much to say. When I stop to think about it, though, I realize that there are a few things that bear reporting to those following my “epilepsy journey” (barf).
First, I discontinued Fycompa, the drug that I devoted a significant amount of energy to complaining about in my last epilepsy-related post; the side effects were simply no longer manageable. I’m therefore back up to my pre-Fycompa dose of Topamax—oh joy, oh bliss—and am still taking Vimpat.
I have noticed an increase in seizure frequency, but since I was never at a therapeutic dose of Fycompa, I’m pretty sure that it’s coincidental. Most of them have been partials, which is a blessing, I guess #positivethinkingorwhatever.
In other news, my PET scan is scheduled for next Wednesday. As I mentioned in some previous post, my epileptologist implied that the information from this and a recent fMRI, in combination with other test information (neuropsych evalutations, VEEG, etc.), might be enough to proceed with surgery. I alternately find this prospect exciting and terrifying, though the alternative—an intracranial EEG (look it up)—is almost as horrifying, without presenting the same immediate hope, so let’s hope for a good result. If the PET scan doesn’t give my doctor what he needs, I’ll likely inquire further about alternatives before going ahead with the intracranials, which are very invasive.
So, that’s it: back to the status quo with my seizure meds, a slight uptick in seizure frequency (although an overall decrease from the number I was having in January/February), and paralyzing fear about the outcome of an impending test and how it will be evaluated in combination with everything else. Epilepsy problems, I suppose.