Yesterday morning, I had a routine checkup with my epileptologist.
In anticipation of an event that’s historically been by and large unremarkable, with a doctor who’s never been anything but kind to me, I naturally spent Monday night—OK, most of the last week—obsessing about the various ways in which it might go wrong. I won’t bore you with the details of my freak outs, primarily because I already embarrass myself enough via my blog. Suffice it to say that my rational brain wasn’t winning.
My husband and I arrived at the hospital early enough that the neurology clinic hadn’t yet opened, even after we’d grabbed a coffee and loitered in the lobby for a bit. After half an hour of nervously waiting in silence (mostly me) and reading news on our smart phones (mostly him), my epileptologist came out to get me. Since, as we all know, it’s good doctoring to build patients up before tearing them down into a pile of emotionally devastated rubble (kidding?), he was smiling rather pleasantly.
To make a long story short, the appointment went fine; I’d even go so far as to say it went well, a degree of positivity lacking in most of my statements these days.
My husband accompanied me into the examination room so that he could relate all of the information that I would inevitably forget to mention. Whereas I thought I preferred to go it alone, I’m now a bring-a-loved-one-to-your-neuro-appt. convert: turns out that when the problem for which you’re getting help involves periods that you can’t remember, having someone with you who witnesses your “episodes” and just generally lives/deals with you and can make relevant observations to your medical professional is super helpful.
After a joint husband-wife effort communicating what’s been going on since my latest hospitalization, we discussed steps forward. The main options, at this point, are 1) a VNS and 2) further medication trials. My epileptologist explained that while he’s happy to proceed with the VNS whenever I decide that I want to do so, the chances that it will be effective for someone with medication-resistant epilepsy (when uttering these three words, he pointed at me) are about as good as the chances that a new AED will. There are a few more drugs that I can try before going the VNS route, and he suggested that we give them a shot first. This makes a lot of sense to me, and since I’m not a (medical) doctor, I might as well defer to his expert advice. I’m still processing the idea that more anticonvulsants, and the potential for more side effects, are in my future, but given that I’m not eager to have another surgery, either, trialling another AED or two could very well be the lesser of two evils.
Until I’m more recovered from what’s happened so far this year, however, we’re not going to mess with anything. In fact, the only change was a decrease in my Topamax by a very, very small amount (from 300 mg/day to 275 mg/day) in an effort to begin reducing the cognitive effects of my medication load (I assume that when I add something, I’ll take one of my current anticonvulsants away). We’ll reevaluate at my next appointment, when my brain will, with any luck, be closer to “normal.”
In the meantime, I’ll keep on keepin’ on, frustratingly slowly.