Hello, ER. (I Hate You, Phenytoin.)

I guess I jinxed myself with my last post about getting out of my neighbourhood—or maybe the problem was that getting out of my neighbourhood was way too exciting for my brain to handle—because two weeks ago, I made another journey to the hospital. This one unplanned, in an ambulance, and while actively seizing.

It’d been blessedly long since I’d had a seizure that necessitated a 911 call. Understandably, I’d say, I don’t feel like dwelling on the experience. I’m hoping to keep these ER visits a thing largely relegated to the past, and pushing them to the recesses of my memory seems like a good strategy for doing so. But for the purposes of keeping things real and destigmatizing epilepsy, etc., I’ll briefly touch on what happened.

The power of hindsight reveals that my husband and I probably should’ve taken historical patterns of how my body reacts to phenytoin into account and predicted that a trip to the ER was on the horizon. I’d been supratherapeutic a few weeks previous, and so my epileptologist had made a small dose adjustment. As we discovered at the emergency room, that tiny decrease led to a remarkably large dip in my serum levels. (Phenytoin is a real PITA.)

Just as COVID changed my outpatient hospital visit, so it did this one. My husband later told me that the EMTs didn’t let him ride in the ambulance with me. He was informed that he could try following in a cab but would likely be denied entry to the ER because of efforts to strictly limit the number of people in and out, which totally makes sense as a general policy. I don’t, however, remember my seizures, am very disoriented after them, and often experience psychosis in their aftermath. My husband is thus the person who speaks for me when I can’t speak for myself. Thankfully, the gatekeepers of the ER let him in with little hassle.

It was a frustrating but ultimately OK night. By the time most issues were resolved, it was morning, and I was very ready to go home. But wait! A twist. Given the length of the seizure that had brought me to the hospital (and how little rest I got following it; busy ERs aren’t the ideal place to ride out the postictal period), it’s not shocking that symptoms of postictal psychosis kicked in. Although I seldom experience visual hallucinations, on this occasion, I saw an old-fashioned mantel clock, clear as day, suspended on the outside of the curtain belonging to the patient bay opposite mine. Its presence confused me, and I was a little annoyed that the elderly man in that bed got a fancy clock and I did not, but it didn’t scare me, exactly. Mundane hallucinations for the win.

We ended up staying until late that afternoon. An adjustment was made to my phenytoin (and fine-tuned a few days later over the phone by my epileptologist). Things aren’t 100%—I’ve been having more seizures than I was before, and I’m still experiencing a few side effects as we continue to search for that elusive optimal phenytoin dose. I’m home, though, and more grateful for that than ever.

And no floating mantel clocks. Maybe I should build one out of LEGO.

2 thoughts on “Hello, ER. (I Hate You, Phenytoin.)

  1. I’m so sorry to hear this! I’ve never been hospitalised by a seizure unless you count the seizure that broke my hip (although I’ve ended up in A&E a few times and once needed IV Diazepam to stop me from going into status epilepticus). I’m also on Phenytoin, but have Clonazepam at night. You’re right that it’s tricky stuff: a blood test a while back showed that there was less than the therapeutic dose in my system because someone who shall remain my epilepsy nurse forgot to slowly raise it every few months! I’m probably still not on the optimum dose, but covid has meant great difficulty in finding out.

    I’m glad you’re home, but very sorry this happened to you x

  2. I’m sorry to hear about your phenytoin woes and hope you get them sorted out quickly! It’s such a tricky medication. I’m so grateful for it because it’s made an enormous difference to me—I just wish it would be a little more predictable!

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