Back to 5B

Well, what was likely the inevitable happened: I landed myself back in hospital, in the same unit in which I spent most of the first two months of 2017. Let’s hope that I’ve gotten it out of my system now.

On Tuesday evening, I had a series of five tonic-clonic seizures at home in the living room, in the middle of watching the Miyazaki film Ponyo (an unimportant detail). My husband called 911. While on the phone with the emergency operator, waiting for the paramedics to arrive, he was instructed to do chest compressions since my breathing was irregular: pretty intense (incidents like this one make me glad that I don’t remember my seizures). We went to the ER, where I was stabilized and the decision to admit me in order to monitor me and adjust my medications was made.

There weren’t any semi-privates available, so I was given a bed in a four-person room. It’s been totally fine. I kind of prefer it, actually. It’s spacious, and my roomies are quiet, for the most part.

When I say that my roommates are quiet, I mean that two of them are elderly women who’ve been here for months and spend most of the day sleeping, making for ideal people with whom to share accommodations. The signora across from me speaks no English and has advanced dementia and Parkinson’s, along with other conditions that I haven’t eavesdropped well enough to identify. The only non-Italian words that I’ve heard her utter are “shut up” and “cuckoo”; she’s hilarious, and I love her. The woman next to her is a mystery to me. All I know about her is that she has a real thing for chocolate pudding. For that reason, I love her too.

But anyway. My seizure frequency has been much higher than my baseline since Tuesday night’s seizure cluster, though I’ve only been having complex partials, no tonic-clonics. The hospital doctors thus first increased the medications that I was already taking, maxing them out. That didn’t seem to have much effect besides turning me into even more of a zombie than I usually am. A new med—one that my epileptologist had suggested at my last appointment with him that I try next—was therefore added to my remarkably large pharmaceutical cocktail this morning.

The current plan is that I’ll spend the weekend adjusting to this drug and wait until Monday, when the neurologists in the unit will be able to consult with my epileptologist, who has been away this week, to go home. With any luck, I’ll be closer to my version of normal, in terms of seizure levels, by then. Fingers crossed that this new medication, brivaracetam, is the one that I’ve been waiting for. I have a good feeling about it.

As always, I’ve been so grateful for our family and friends through all of this. Above all, for my husband, who dealt with the seizure cluster as it was in progress, lovingly compressed my chest, was an ER champ, and comes to the hospital every day after work with a minimal number of complaints. How did I find such an amazing guy??? A special shout out goes to the friend who met us at the ER, providing much-needed support during a very difficult time, and to my buddies who’ve come and spent hours entertaining me over the past few days. Y’all rock, and I love you in the friend-appropriate manner.

I’ll close this somewhat-scattered post by saying that this has been a bit of a wakeup call for me. I thought that I was out of the danger zone and thus wouldn’t see the neuro ward for a while. Evidently, I was wrong. Epilepsy is an unpredictable beast that needs to be constantly monitored, and even when the noblest attempts are made, one can’t always tame it. It’s a difficult reality, but it’s mine, at least for now, so I need to be prepared for things like this. If you’re part of my epilepsy/life team: thanks. Navigating the challenges that come with a neurological condition like epilepsy is hard work, and you make a real difference.