I had an appointment with my epileptologist yesterday that was significant in two regards. In fact, I left feeling much better than I had walking in, which isn’t always the case. (Please note that the fact that I often sit in the streetcar dejected and downtrodden after discussing the misworkings of my brain is not the fault of my medical professionals.)
First, I was able to go through the list of questions that my husband and I had amassed about the proposed intracranials. We departed the neurosurgeon’s office a few weeks ago stunned, only realizing when we got home and I stubbornly began suggesting that maybe I’d prefer to live with seizures for the rest of my life rather than proceed with a surgery to implant electrodes into my brain without the promise of being “cured” at the end of the ordeal that more information might make me feel better about what I was facing. Plus I know my epileptologist pretty well at this point and trust his expert opinion, and I had a feeling that hearing him say “I think that this is the right thing to do” would push me from “yeah, I’ll probably go ahead with this” to “I’ll stop behaving like a woman child and fully commit.” He gave me all the scientifically backed reassurance I needed (my favourite kind!), reviewing my scans with me in detail, going through the reasoning for the intracranials, and telling me that he’s confident that any epilepsy centre evaluating me would have arrived at this step.
Next was a discussion of interim seizure solutions. We agreed that since my current medication cocktail isn’t incredibly effective, it doesn’t make sense to stay on Topamax. While its less-than-ideal side-effect profile was once balanced out by the fact that it made a marked difference to how often my neurons misfire, given that it continues to make me feel like an idiot, but no longer like an idiot with fewer seizures, it seems that the time is right to try something new.
So, I’m switching, very slowly, to Lyrica (pregabalin) and staying on Vimpat, which is side-effect neutral for me. It’ll be six weeks, or maybe two months (I forget), until I’m completely done with Topamax; my doctor wants to minimize the risk that I’ll go into status and end up in the ICU, especially with my surgery approaching (sounds sensible, I’d say).
I really hope that this transition away from my old nemesis of an anticonvulsant is successful. However, if I find that I have a sudden uptick in seizure activity and have to go running back to T, it won’t be the end of world—that, my friends, is called “managing one’s expectations.” All in all, this feels like a concrete step in the right direction: away from those little white pills.