I’ve been feeling so much better since that episode of status epilepticus. As I’ve had time to recover from the seizure itself, my Dilantin level has gradually come down, though it’s not yet at an ideal place (more on that in a moment). Best of all, and somewhat paradoxically, I’ve been having way fewer seizures than has been my recent baseline. Like, way fewer.
It seems impossible not to make a connection between this reduced seizure activity and the Dilantin (happily) raging through my veins. My epileptologist and I have always deliberately kept my Dilantin at a minimum therapeutic level because I show signs of toxicity when it’s at the upper end of the normal range. Turns out that the joke’s on us! We now have more and more evidence that I’ve needed more Dilantin all along, even if there are tradeoffs to be made in terms of managing side effects.
Armed with this growing body of data suggesting that high levels of Dilantin=greatly reduced seizures (for me), I’m really trying to—and am usually able to—reframe my ICU visit for myself. And why shouldn’t I? Something concretely positive has come of it, and something we likely wouldn’t have otherwise figured out.
The sucky part (because there apparently has to be a sucky part) is that trying to get my Dilantin to a level at which the side effects are a bit more manageable but I’m still getting good/better seizure control has been pretty uncomfortable. I feel hopeful, though, and I’m 100% willing to learn how to live with some nausea, dizziness, etc. if doing so continues having this kind of positive impact.
In sum: a real silver lining of the liquid-Dilantin variety.