I’ve decided that a very necessary part of my series on seizures/epilepsy will be about emotions. That will be coming up at some point in the future.
I’ve been putting off this blog post for quite a while. Part of why I have put is off has been because I don’t want to re-hash the situation in my mind. Another reason is the fact that my memory of the whole 10 day period from about a day before my first seizure until 7-ish days after my second seizure are such a blur in my memory. If I start talking about any part of what happened, it’s common for my boyfriend to jump in saying oh no you’re thinking of the first seizure, not the second (or vise versa). It’s possible that part of what I said for part 1 (my first adult epileptic seizure) actually happened after part 2. Anyway, my biggest reason for this delay has been that I don’t want to go back and read that first blog post, but without reading it I can’t know what I have already said. So I’m going to take the easy way out and basically give you my boyfriends explanation of what the second seizure was like and then discuss my hospital stay.
Ryan has said that my second seizure wasn’t as long or “dramatic” as the first. He estimates that it was only a couple of minutes long. However, I bit my tongue pretty significantly. He had been told to roll me onto my side if I were to have seizures, but I was facing a wall (while laying on my side) when it started so he rolled me over towards him when he first suspected that I was convulsing. I didn’t scream like I did before the first one. He said I was making a gagging, light growling or choking type of noise. He realized that I was in fact having another seizure so he rolled me back onto my side which allowed my mouth to open up and some blood and spit/saliva came out. He called 9-1-1 again and this time we opted to go to a hospital that was further away but that has a great reputation for quality of care.
Since this was my second seizure, the doctors decided that I should start medication. I was started on Keppra, 500 MG twice a day. They ran bloodwork and my CPK level was around 800. They ordered tests like an EEG, MRI and cat scan. All of the tests were read as normal. The hospital stay was 5.5 days in total, but I could have left after day two or three (once the tests were finished) except my CPK level kept rising and they wanted it to start trending downward before they released me. My CPK peaked at day 4 at 6000. I remember the nurses kept asking me if I was in pain or wanted/needed any medication I was having some headaches so occasionally I’d say yes to tylenol. At some point a nurse asked me if I needed pain medication and I said no thanks, my headache is gone and she said “I’m just so surprised that you aren’t in pain. Most people with a CPK significantly lower than 6000 experience body aches, cramps or just general body pain.” I left the hospital without ever having body pains.
Once I got home we made an appointment with my family doctor to discuss my seizures and to get a neurology referral. She said that for the most part she wouldn’t really be treating me for my seizures because that would be left up to my neurologists judgement for the most part. She said that my neurologist may want to run additional tests, but that it’s common for people who have seizures to never find a cause and just be labeled as having epilepsy (which isn’t really a specific condition but is instead just a label for a tendency to have seizures).
After we got back from that appointment I remember hanging up my coat on our coat rack while saying “So I guess I should mentally prepare for a neurologist to tell me that I simply have epilepsy and that there is no apparent reason why these seizures happened but they may happen again. I may have to be on seizure medication for the rest of my life.”
Looking back at it, I can’t really understand why I felt this way. But when I said this I was feeling a bit disappointed or frustrated with my doctor, thinking she was being lazy. I guess I had it in my mind that there had to be some cause because I wasn’t drinking, my brain shows no physical abnormalities, etc.
When I turned around from hanging up my coat Ryan had this almost frozen expression on his face. His eyebrows and forehead were a little creased with some sadness mixed with concern, but most of his face also showed this shock or surprise. I immediately felt this heavy feeling in the pit of my stomach because I could tell exactly what he was thinking and feeling. He was surprised that I had just “woken up” to the fact that something was probably “wrong “with my brain. & that if something was wrong with my brain two different days in the past week, the odds of it still being wrong (or at least occasionally “getting out of whack” in the future is probably high.
I consider us both to be really practical people. We are both “prepare for the worst, but hope for the best” type people. We try to avoid sugarcoating things too much, and we both believe in living life in reality instead of in denial or avoidance. It’s very unlike me to take a week after a traumatic event to accept the reality of something. Yet, when I had said it I wasn’t even accepting it yet – it had just then even OCCURRED to me that that was a possibility.
It’s still bizarre to me how much the seizures really messed with my ability to use logic and reason. While they did make me live in la-la land for a while, I’m somewhat thankful that they also seemed to make me a little numb to life. I’m a pretty anxious person in general, so I’m still surprised that I wasn’t having panic attacks during this whole journey. I’ll go into all of that more in my “the feelings that come as a result of seizures” which will come later.