Dilantin, ER, Vomit: A(nother) Scattered Blog Post

I’m currently prescribed five anticonvulsants. Five. Some are better than others, but each is its own special flower/beast, in terms of side-effect profile. That said, I’m grateful that I’ve found a combination of medications that’s kept me out of the hospital since the summer.*

Among the drugs currently inhabiting my blister pack is phenytoin (Dilantin), one of the very first AEDs. It’s not something I wanted to take, mostly due to its potential to make my bones, already on the crumbly side, weaker. I was loaded on it while in status epilepticus last year, however, and when my attempt to wean off of it resulted in a return to the neurology ward, I went back to popping it on the daily.

The thing about phenytoin, as my epileptologist has explained to me before, is that while it can be extremely effective, it’s more finicky than newer medications since there’s a relatively narrow therapeutic range at which it should be present in one’s blood, and hitting that sweet spot can be a matter of trial and error. To make matters more complicated, phenytoin levels can fluctuate depending on other medications taken and additional factors, such as whether it’s sunny outside and who won the Oscar® for Actor in a Supporting Role this year (I kid, I kid …).

So, yes. You’re probably hoping that this lengthy digression is going somewhere, and I promise that it is, but not before I indulge in a little more, well, digression.

The Wednesday following my return home from my recent trip to BC, I noticed that I was having more trouble with balance than usual. A little while later, I realized that I had double vision and that I was slurring my words. After a bit of discussion, my husband and I decided that we’d see if I “slept it off”; if I didn’t, we’d call my GP in the morning.

We called as soon as the office opened, and I got an appointment for 2 p.m.

I first saw a resident, who asked about my symptoms and did a full neuro examination. She then left the room to consult with my family doc. They both came in a few minutes later.

My GP reviewed what the resident had observed and suggested that my husband and I go to the ER. I didn’t look like myself, she said, and she felt that I should have my phenytoin level checked more quickly than she could facilitate. Would I agree? (Did I have a choice?)

To make a very long story short—and omitting some details, in the interests of maintaining a shred of self-respect—things deteriorated once we got to the hospital. (I will say this: in a strange coincidence, a good friend was also waiting in the ER, in her case due to a broken foot. She stroked my hair, and, like a pampered cat, I was [temporarily] contented.) I ended up staying overnight, until around dinnertime the next day. My phenytoin level was, indeed, above the therapeutic range, though the explanation for what happened is probably more complex, as I’ve been told at a few follow-up appointments this past week. My brain is an interesting, terrifying place.

After returning to our apartment that Friday, I slipped into bed and slept for almost two days straight, only getting up to puke, go to the bathroom, and complain to my husband (sorry, TMI, but what else do you expect from this blog?). By Tuesday or so, I was starting to feel better; by a week after this hospital adventure, I was back to, oh, 85%. Since my dose of phenytoin was adjusted, I haven’t had any double vision, weird speech, or really bad balance problems. I’ll have a blood test done in a few days to make sure that it’s at a better level now, but based on how I feel, I’m guessing that it’s OK.

*That’s kept me from being admitted to the hospital since the summer is a more accurate statement.