Above Average

I’ve never consistently tracked my seizures.

Here’s where, before continuing with this blog post, I make excuses for my shortcomings as a seizure diarist.

First, there’s the memory thing. If I have a partial seizure before bed, when they usually occur, I sometimes have to be told the next morning that it happened since I’m normally more or less recovered by then and have no idea that anything’s amiss; if I have a tonic-clonic one, on the other hand, it takes a long time for me to regain full awareness, at which point I still feel sick and sore and know that my body’s been through an “event” but have no memory of the seizure itself.

Second, and probably worse, I don’t like seeing the numbers on the page—I tend to find them demoralizing, even if they mark an improvement.

Third, and worst of all, I know that my husband will do the seizure tracking for me. He’s very data-driven, enjoys (not the right word, but you get it) looking for patterns over time, and isn’t flung into a depressive state by months in which he can easily determine, because he uses a colour-coded calendar that he updates on a daily basis, that my seizure frequency is higher than usual. In other words, he’s an intelligent human being and an extremely devoted life partner.

On the last day of the month, he adds everything up. If the number is in line with what my brain typically does, he keeps it to himself. If there’s some sort of change, however, he calls me into his office, where he keeps the binder of seizure charts.

On Thursday—February 1—he wanted to show me the seizure calendar for January. Oh boy, I thought, finishing my pitawich and bracing myself. Though I’d been carefully telling my epileptologist that I’d been having “two or three” seizures a week, that number was based on nothing but wishful thinking and the desire, uh, not to bother him too much, I guess? (Don’t worry: I’ve now vowed to accurately report my seizure frequency during my neuro appointments, using the seizure diary as an aid.) In any case, I’d had a feeling that there’d been an uptick, given how worn out I’d been, but I wasn’t expecting the reality: ten more seizures than most months in 2017.

I wish I could be happy about being above (my) average.

What’s weirdest about this seizure surge is that my VNS is in the ramping-up process. It isn’t at a therapeutic level of stimulation yet, but still—it seems counterintuitive, and yes, a little demoralizing, that this increase in seizures should correspond with an increase in stimulation from the titanium puck implanted in my chest. It’s in all likelihood pure coincidence. It’s hard, though, not to wonder if there’s a connection.

My hunch is that there’s a non-VNS-related explanation, or that there are non-VNS-related explanations, for this worse-than-usual month. Another possibility is that I can blame the VNS, but in a less direct way: its side effects have been stressing and tiring me out, and stress and fatigue make me more likely to have a seizure. Frustratingly, there’s no way to know what’s responsible, so I have to do my best to practise accepting what I can’t change. My plan is to control the variables I can, assume that February will be better, and make more of an effort to be involved in the seizure-tracking process. Knowledge, as has been said, is power. Even, I suppose, when it makes you feel bad.