Same-Day Appointment with My Epileptologist: Success/the Beginning of a Multi-Month Pregabalin Breakup

I woke up yesterday morning to two missed calls and a voicemail from an “unknown” number.

I’ve been doing this chronic-illness thing long enough to know that 95% of the time, if you’re a heavy user of the health-care system, an unknown caller means a medical office, usually one in a hospital. Sure enough, it was my epileptologist’s receptionist: she’d received the message that I’d left the day before asking for a follow-up appointment after my recent hospitalization, and she knew that it was last minute, but could I come in at eleven?

After quickly consulting with my husband, I phoned back to say yes. I was then left with just long enough to get dressed, eat my usual oatmeal, and obsessively brush my teeth (three cycles of my electric toothbrush, as is my way) before I had to leave the house, hospital-bound.

It’s been a while, TWH. JK: I seem to find an excuse to be in you every few weeks. #lovehaterelationship

In a sense, I was glad to have almost no advance notice. This is because I normally get weirdly worked up prior to seeing my epileptologist. When I force myself to stop in order to think about the situation rationally, I remember that he’s a super nice guy with my best interests at heart. However, it remains much, much preferable to just eliminate the pre-appointment weeks during which I usually convince myself that he’s going to accuse me of faking my seizures/tell me that I’m a horrible person/inform me that I’m all together a lost cause. This time, I had fifteen minutes in a cab and twenty in a waiting room, where I distracted myself by eavesdropping on a heated father-daughter conversation taking place a few seats over (sorry, Charlotte, but I don’t think your dad’s going to cave; you can kiss that girls’ trip to Muskoka goodbye). It was perfect.

The appointment itself lasted ten or so very fruitful minutes. What I most wanted to achieve from it was to obtain permission to begin reducing one of the four anticonvulsants that I’m currently taking; while I was in the hospital last month, a new medication was added and two were increased, but nothing was taken away, resulting in a drug load that’s been pretty intense for me. I was thus eager to try to simplify my regime, especially since Brivlera (Briviact in the US), the latest addition to my cocktail of AEDs, has proven relatively effective and I’m not convinced that two of the other three are doing much.

He agreed, though with the provision that I taper very slowly and that we leave Topamax—my nemesis—as is. (I reluctantly understand why he doesn’t want to allow me to break up with Topamax, given that I’ve now attempted to reduce it on two separate occasions, both of which could be rightly termed failures, but ugh.) He suggested that we instead target pregabalin (also known as Lyrica), which I’ll reduce by 75 mg every two weeks.

So that’s the plan. Though I’m several months away from being back to a three-anticonvulsant taker, which isn’t something I ever thought I’d desire to be, I can now see the light at the end of the tunnel. It looks a lot like clearer thinking and less drowsiness. I can hardly wait.



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