I didn’t post a column on the blog yesterday – mea maxima culpa – because I had a bunch of medical appointments at WashU; the first daily post I’ve missed in ages. We received a second opinion on the management strategies moving forward, which was informative and productive. Also, the meeting with my new neurologist went well. He gave me the standard neuro exam and declared me fit, which gives me a great deal of satisfaction considering how many neuro exams I’ve failed in the past month. Most satisfying of all, when he asked me to walk on my heels, my left toe didn’t flop forward as it has been doing. This was the final test that I took and failed at the rehab hospital – hat tip to my PT, Jill, who worked on this with me during my final PT session. So it appears that my walking program over the last few weeks has made demonstrable progress.
Likewise encouraging is the neurologist’s opinion that my chance of additional seizures is very low – provided the goddamn tumor doesn’t regrow. Seizures suck, and I don’t want a repeat of seizure day, EVER. “Prognosis is very good,” he says. He conceded that the anti-seizure med I’m taking, Keppra, is basically an insurance policy, since my brain is inevitably scarred from surgery and thus forever puts me at higher risk for seizures relative to the rest of you happy readers with normal brains. Therefore, no immediate plans to taper the Keppra, which is a little disappointing. I’m on it for two full years: April 2017 before we re-evaluate. The doctor also mentions that some patients choose to stay on anti-seizure meds for decades after being seizure-free, simply because they don’t want to take any chances. After re-reading what I wrote about seizure day, I can sympathize with that perspective.
In any case, it looks like me and Keppra will be a team for quite a while to come, so I’m going to get used to it. Therefore, it’s worth discussing some of my thoughts about the side effects of Keppra. These side effects are many and controversial. I’ve seen chat boards where people talk about suicidal thoughts, major depression, Keppra ruining their lives, etc… Plausible, although I have to say that my mental state – morbid thoughts about cancer aside – has been pretty upbeat during the entire course of Keppra the last month. On the whole, I’m tolerating it reasonably well: no mood swings, nausea, or behavioral changes. When I first started, the pills made me shockingly sleepy after every dose, and my mind felt sedated. I must have acclimated, because daytime somnolence is improving, and my mind is feeling increasingly like my old self.
Sleep is where I notice the Keppra these days. Waking up is hard and disorienting. Imagine swimming upwards through 100 feet of water, and you’ll know what it feels like to wake up whilst on Keppra. Previously, as befits a circadian biologist long accustomed to taking all night time courses, and a father of young children that need midnight changes and bottles, I was able to wake up immediately and be crystal clear at any time of night. These days, I wake up at 8am, with the sun shining through the room, and I’m confused and disoriented. Confusion, of course, is about the worst feeling in the world, so I don’t care for this effect much. For many days, I had hoped that this disorientation was simply the result of too many different hospital beds, or too many circadian disruptions. But after several weeks at home, this excuse is wearing a little thin. The sleep disruptions of Keppra are the real deal. Synergistic with the effects on waking, my core muscle groups are unusually weak since the surgery. Probably from two weeks of lying in hospital beds, and perhaps a neural effect stemming from the removal of a sizable portion of my pre-motor cortex. In any case, the result is that physically getting out of bed is more difficult and requires greater exertion than usual. I also find myself waking up feeling pessimistic and negative, which might just be a blood sugar issue; I can’t be certain. There has been a modest increase in irritability, which may be due to the Keppra, or from attention-starved toddlers intentionally misbehaving this past month – more on that later.
Anyway, regarding Keppra, I can’t complain too much, since (1) seizures are bad and I like having the insurance policy, and (2) the mental fog can be banished with a hot shower and strong cup of tea. Lord knows worse things have happened. To me. This month. I can live with the Keppra where it’s at, but all things considered, I’ll be over-joyed if I go two years without another seizure, and we can taper this thing down towards the end of this decade. I’m having an EEG taken next week to get a baseline, so if we choose to taper later on, there will be a good reference point.