And they gathered very useful information. Tuesday morning the neurologist walked in with her entourage of interns/nurses/neurologist in training and said my EEG from overnight had been very informative already. The data so far had let them know that my seizures are coming from a part of the brain that isn’t used for storing memory or connected to movement or speech etc, so if it needed to be removed it won’t affect those things, and we could continue in that direction. She then continued to say she would like to sleep deprive me on Tuesday night.
So she asked me only to sleep from 2-6AM. Here I already feel sleep deprived from the night before where I slept on this awful bed with all these cords attached to me, plus the night before when I had to get up early for my flight, but now she wants me to try and stay awake until 2AM and set an alarm for 6?!?! Does she not understand sleep is probably my favourite thing and I’m not really a violent person but she about to make me become one?
But fine. I’ll do my best.
She also asked me to try and be on FaceTime or Whatsapp as much as possible in case when I’m chatting, the person I’m talking with can let me know and I can signal it on my alert button. That way they can know when to look, as well as what time to watch for.
Well, a couple things to follow up on that. I only FaceTime my mom so my kids can chat with her, and right now she’s taking care of my kids so that’s kinda pointless. Then my sister N but when I tried once, my niece was concerned about how I looked and why I was in the hospital, and asking to see the doctor, asking if I was hurt… She didn’t quite get it, which I totally get. I mean I should of thought of that before I called. But I mean the hospitals have their cameras recording so they’re just going to have to live with that information.
As far as staying up until 2? I managed. Barely. I read and listened to music and relied on Netflix when my brain stopped processing words lol. Then, I did have a much better sleep for the 4 hours that it did last since I was dead tired but wanted to punch someone when my alarm went off at 6.
I managed to stay awake while I had my vitals checked and IV flushed. My medication was given to me in a lower dose. Then as I’m scrolling Instagram trying to stay awake, I hear the alarm go off again ‘event detected’ and I’m chilling wondering which room it’s from this time. Then a new one I’ve not heard yet a second later ‘seizure detected’ and the nurse is hurrying to my room.
‘C are you alright?’ Umm yeah…. I’m ok…
It’s detecting your having a seizure…. Umm I feel pretty normal. I’m awake and taking and scrolling. But she goes through a bunch of testing questions for after an event to make sure things are all hunky dory and that’s how I start my day.
Then a couple hours later the neurologist is back in with her entourage to see how my night of sleep deprivation went. She brings up the fact that yesterday (Tuesday) some point, I had a seizure while I was reading.
I had no idea. The alarm didn’t go off, they just found it during a review of my scans. She said what was interesting was that after they reviewed the scan and the video, she said I had no seizure like movement but I actually flipped the page of my novel during the seizure like nothing was happening.
So to me, this doesn’t seem that exciting or unusual, but to to neurologist apparently I’m some phenomenon. She said she’s not seen things like this before and it doesn’t complicate the situation from yesterday where the seizures from the first night were all originating from one part of the brain that doesn’t effect anything important if removed, this seizure originated from the left.
So it’s now crossed hemispheres and made my situation much more complex and difficult. She didn’t expand much from there, as we’re only two days in so we’ll need more data.
My medication is going to be reduced yet again until tomorrow morning I will be down to nothing. I will be allowed to sleep normally tonight but no napping throughout today. And we’ll see how that works out.
I’m just hoping for a final decision/answer once I leave here… whenever that is.
Speaking of whenever that is, I just finally had a ‘bowel movement’ to speak politely. From my flight and the food and who knows why else, but I hadn’t taken a shit since Monday night so I had a laxative at lunch today and it kicked in just in time. I’m so thankful. Not at all thankful that the nurse is standing outside listening but 🤷🏻♀️ what can I do.
They choose their job not me.
And I appreciate them for it.