Two Weeks to Two Months: A Tangible Sign of Progress (Yay!)

I’ve been going to see my epileptologist every two weeks or so to have my VNS adjusted—and for other epilepsy stuff—since, um, December? (Maybe since sometime in November. Please excuse my imprecision; I’m going to go ahead and use the “bad memory for neurological reasons” line, but really I’m just too lazy to scan through my online medical chart to verify the dates.) Six-month checkups are my norm. This has, then, been quite the surge in trips to the hospital (and in consumption of the mediocre food-court sushi with which I reward myself after every appointment, positive or negative).

I headed there this past Thursday, arriving with enough time to purchase an overpriced cookie to eat while waiting to check in with the receptionist at the epilepsy clinic. At my appointment two weeks earlier, my epileptologist had increased both the autostimulation threshold of my device and the frequency with which it routinely zaps me. These adjustments have majorly improved my quality of life. He had also increased my Dilantin since a blood test revealed that my levels were a little low (I swear that Dilantin is the most fickle medication ever—I’m now taking 330 mg at night and 30 mg every second morning to prevent my numbers from swinging too far in either direction). This change has made a huge difference, too: for the few weeks before we discovered that my Dilantin level had snuck down yet again, I’d been having more seizures than normal, including a couple of tonic-clonic ones, and it was good to figure out why. Since adding the every-second-day 30 mg, I’ve been more or less back to baseline.

Though the temptation to overshare is, of course, real, I’ll do the right thing and cut to the chase (i.e., I won’t recount this visit to the epileptologist in excruciating detail). After a resident took my history and did a neuro exam, my doctor made a minor adjustment to my VNS, agreed to make a minor adjustment to one of my medications (baby steps), and said that we can move to less frequent appointments. I’ll see him in two months, so still much sooner than I usually would but much, er, less soon than I would have with the recent every-second-week routine. Two months instead of two weeks sounds good to me.

I really hope that as we transition into summer, I’ll ease into a schedule with fewer medical appointments so that I can start flooding my (old-fashioned) agenda with other things. I’ve come to terms with the fact that work isn’t in my immediate future, but I’ve been brainstorming ways in which I can fill that gap in my life without disrupting the balance that I’ve been trying hard to achieve. Stay tuned.