Due to excuses mostly unrelated to epilepsy, I haven’t been posting on this blog as frequently as I once did—I’ll try to be better, but no promises. I had an appointment with my epilepsy specialist on Thursday, though, so I figured that I’d make the effort to write a shortish entry with a (kind of boring) treatment update. You know, to keep my readers engaged and interested, which is always my #1 priority.
Since my VNS is now mostly programmed, I’m no longer seeing my epileptologist every few weeks, as I did while he was still ramping it up. I continue to have checkups more frequently than normal, however, so that he can tweak the VNS settings, keep an eye on my seizure frequency, and monitor my medications. For whatever reason—probably because I have an anxiety disorder 😬—I always get really nervous before big appointments; it’s thus nice not to be in constant psyching-myself-up-to-visit-a-specialist mode, which was the case when I needed to head to the epilepsy clinic twice a month. Now I only go through worst-case-scenario thinking about neurology appointments for forty-eight hours or so every thirty to sixty days.
I don’t totally know what I wanted or expected from this latest visit, but there were, in the end, two significant changes to my treatment plan. The first will ultimately be good, probably, but is currently really annoying me: my epileptologist increased the length of time for which my VNS stimulates from thirty to sixty seconds. I’m surprised by how much this has affected my VNS comfort level. Doubling Vanessa’s stimulation time has been … exhausting. Inexplicably, it’s also made my arms feel like they’re vibrating when I use my rollator, and it caused me to wake up several times the first night, accusing my husband of putting his phone next to him in bed with its notifications set to vibration mode. Nope: turns out that it was just my VNS alerting me that it was 3:00 a.m. His phone was in “do not disturb” mode and on the bedside table.
The second is that we’re going to try reducing pregabalin (Lyrica), one of my AEDs, by half, with the end goal of eventually discontinuing it. My epileptologist and the (delightful, friendly, very competent) resident who’s currently working with him asked which med I wanted to target for elimination first—I had already expressed to the resident my desire to start getting off some of the five(!) anticonvulsants I currently take. I suggested pregabalin since a) it makes me sleepy and dopey, and b) I’ve never been convinced that it makes a huge difference in terms of my seizure frequency. This was, luckily, the medication that they also had in mind: my epileptologist explained that it was the most medically ethical choice because there’s the least amount of evidence for its efficacy for seizure control, yet it comes with a host of undesirable side effects.
It’ll be interesting to see how I feel with fewer pharmaceuticals chilling in my bloodstream. My seizures are up a little again—I had a few tonic-clonics last week, and my weekly complex partial average isn’t as low as it was a month ago—but there are life factors to which I can attribute this uptick, so I’m not freaking out about it or assuming that I’m heading for another 2017, seizure-wise. My VNS is definitely helping, and I’m at the point where the side effects from all these medications are doing more harm than good. I accept that I’ll need to continue popping AEDs for the foreseeable future, but, as my epileptologist acknowledged, there are likely a few of these five that aren’t pulling their weight. Now it’s about figuring out which ones they are.