Seizure Update #2

I’ll start this off by saying that-for the record-I’m finally tired of talking about seizures. Which is strange, because I talk about them compulsively. Even when I want to stop, sometimes I can’t. But in the back of my mind, there’s this growing exhaustion at just the thought of talking about them. So I probably won’t for a while (at least on the blog unless it is particularly relevant to something else I’m writing about), but I wanted to give you guys a quick update before I stop because I know I left you hanging last time with the promise of MRI #2 results.

So… According to MRI #2, I definitely don’t have brain cancer. Yay. And that thing they saw on MRI #1 is actually not anything to be concerned about. Definitely not causing the seizures. Which is good, in my opinion. So I go back into the category of people whose seizures are unexplained. Which makes me very mysterious and interesting, of course. 

I’m on a couple antiseizure meds right now and scheduled to go in for a 4 day EEG in October. That’s right… four days in the hospital with electrodes hooked up to my head. I can’t leave the whole time. And apparently they don’t let you sleep and/or randomly yank you off your meds to induce seizures so they can watch your brain while you have them. And I’m pretty sure there won’t be coffee there. Unless I have it smuggled in. Which isn’t a bad idea.

The electrodes and lock-down part I’m fine with. That’s actually kind of cool (see prior discussion of how I love any and all tests). Four days is a long time and I have a rather rambunctious mind so hopefully I’m allowed to bring my computer so I can read, write, and entertain myself as usual.

The inducing-seizures part I’m trying not to think about. I find having seizures in front of others horribly embarrassing. Like…. your worst nightmare embarrassing. Mortifying would probably be the best word. With a normal seizure I don’t know it’s coming so I don’t have any time to worry about who is around. And once it’s happened, I can’t change who was there so I just forge onward and try to act normal. But knowing one is going to happen with people intentionally watching me… that is a daunting thought. And vaguely creepy for some reason. Probably because being unconscious with people watching you is the basic formula for creepy, right?

Enough about that. Lets not borrow trouble before it arrives.

For now I’m just taking my meds and getting a lot of blood drawn on a regular basis. I think it’s safe to say that my childhood phobia of needles has been successfully overcome. When I was in middle school it took my mother and three nurses to get my blood drawn. They were basically all sitting on my to hold me still. Now I’m all “so, what are your plans for this weekend” with the phlebotomist while casually averting my eyes while they do their thing. Surprise side benefit of epilepsy.

I still need about twice as much sleep as normal. Going for an entire day at even a normal pace is exhausting and I end up sleeping the next two days to try to recover. I’m getting better at anticipating this and adjusting my schedule accordingly but sometimes it still takes me by surprise. My family went canoeing on Saturday for three hours for my dad’s birthday. We had a blast, but I’m just feeling recovered now and it’s been almost 24 hours (many of them spent sleeping).

This is pretty much the opposite of how I used to operate. During college, I actually skipped entire nights of sleep on a regular basis because I had an overnight job. I’d stay up all night, get off work at 6 a.m., sleep for an hour, and be in class by 8:30 a.m. Just the idea makes me tired now. Oh well. Half-measures are boring anyway. If you can’t be at one extreme, you might as well be at the other, right? (even I’m not sure if I’m being sarcastic here or not…)

And I’m still having seizures. I have tonic-clonic seizures (fka grand mal seizures) about every 5-9 days. So I wake up completely disoriented on the ground somewhere about once a week. Which, I have to say, is humorous when I think about it on a global level but not so humorous in the moment. No major injuries to report despite two bike-related seizures. That’s a pretty fantastic injury-free rate and one I hope to maintain.

Finally, thank you all again for all the support. I officially have exactly the number of neon running socks that I need (a number I thought would never be reached). I received hilarious and abundant gifts, including a lot of grace from those of you I’ve had to cancel plans with. I appreciate it.

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