I met with my epileptologist last Wednesday to follow up on the hospitalizations that seem to have plagued me this summer. Each of these mini vacays (ha…) from my everyday life has resulted in a heavier medication load than ever before, and since I’ve been deemed ineligible for resective surgery (for now, at least), I’m left with few non-pharmaceutical options. I went into this last appointment wanting to discuss what’s possible in a general sense and hoping to reduce the number, or at least the doses, of the anticonvulsants that I’m taking.
In terms of the latter of these goals, I was almost completely unsuccessful, and not for lack of trying, nor for lack of complaining. I’m thus fully back on Dilantin, and it’s been hitting me hard. I’m maybe starting to adjust to it, but I’m still sleeping a total of three or four hours more than I normally would in a twenty-four-hour period, plus I’ve been getting frequent headaches and cold sweats during the night. (On the flip side, it’s been pretty amazing for seizure control, so I really shouldn’t focus on its negative qualities, but look at me go!) Despite my whinging, my doctor decided that he doesn’t feel comfortable enough to do more than gradually reduce Vimpat from 600 mg to 400 mg/day, where it was until my recent ICUization.
The big thing to come out of my thirty minutes or so with him was his suggestion that I go ahead with starting the process of having a vagus nerve stimulation (VNS) device placed, which was first presented to me as an option when I was told that I couldn’t have corrective surgery. VNS is often described, as it is in this linked article, as a “pacemaker for the brain.” If I got one, it would go off throughout the day at intervals determined by my epilepsy specialist; it could also be manually triggered by a magnet held over it if I had an aura or someone else noticed me having a seizure. The newest version, which the Canadian government would pay for me to get, gives extra stimulation when it detects a rapid change in heart rate, too, since this is often a sign of the beginning of a seizure.
The VNS would be implanted under the skin in my left chest, with wires connecting it to the vagus nerve (in my neck). Though this is, obviously, an operation, it isn’t a brain surgery, and the procedure a) is pretty short (an hour or so); b) usually doesn’t require an overnight in the hospital; and c) is reversible. There’s something super comforting about knowing that the device could be removed if the side effects are intolerable or if I give it a reasonable chance and it doesn’t help.
I’ll provide more details about the device and the procedure sometime later if people are interested. For now, I’d just like to point out that having a little computer surgically installed in my chest would make me more of a cyborg than most (any?) of y’all.
I should probably also let you know that the VNS isn’t a replacement for anti-seizure medications, and it doesn’t usually result in seizure-freedom, but rather in fewer seizures that are less severe with a shorter postictal period. That said, my epileptologist did suggest that if the implant makes a difference for me, we can more aggressively reduce my meds down the line—a huge motivator. I realize that I may not have made this clear enough, but the five-AED life really isn’t working for me.
I’ll close by stating the obvious: that I’m very fortunate in that I trust my epilepsy specialist pretty much completely (but not blindly; I do an annoying amount of research that I like to think keeps him on his toes #academic4life). When he told me earlier this year that he thought that I should try a few more drugs before taking the VNS plunge, or whatever the correct analogy is in this case, I listened. Now that he’s saying that it’s VNS go-time, or at least VNS seriously-consider-time, I know that he has my best interests at heart.