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Saturday, June 14, 2014

Seizure weekend

The past couple of days have not been fun.


Thursday I went to lunch with 3 coworkers. Half-way through lunch (around 12:30) I started into a partial seizure. At first it was nothing out of the ordinary. My leg was twitching slightly, my head felt a bit weird, but nothing too bad.

The walk from Dinosaur BBQ back to the office was a bit rough, because of the leg, but not too bad. I got back to the office and sat down at my desk. Soon after I got to my desk my leg started going a little more intense. It lasted a while then calmed down. A few minutes later it started back up again. I was doing as much work as I could throughout this whole thing - answering questions for my interns, helping them figure out some issues, etc.

At 2:30 I was supposed to meet with the server team to talk about something that we had discussed at our larger Monday morning meeting. At this point my leg had stopped, and I could tell that the seizure had subsided. I knew at the time what I was supposed to be talking about at the meeting, but soon after I got to the meeting I forgot what we were going to talk about. Another seizure had started. The server team had something dropped on them last minute, and they were talking about that when I got there. Nobody remembered why I was there, and I still don't recall.

The seizure that started during the meeting was in my arm, as it has been occasionally before. It got pretty intense fairly quickly, so around 3:15 I told my boss that I was going home to rest. The seizure stopped shortly after getting home, and I slept most of the day.


Friday morning I woke up at 6:30, as I always do, knowing that I was not likely going to be in any shape to go to work. Sure enough, I was still exhausted from the 3 hour seizure(s) the day before, and I had a headache as I often do after a seizure. Usually these headaches last for quite some time, and will not subside unless I sleep them off.

Shortly after waking up I sent a text to my boss, and my team, telling them that I was OK (since they had witnessed the seizures the day before) but that I would not be in because I was still tired and had a headache that was not likely to go away any time soon.

At 7:15 another seizure started; Again it was in my arm. It's not normal for me to have this many seizures in such a short time, so I sent a text to my mom telling her what was going to the hospital and quickly walked across the street to the hospital. (Yes, luckily I just moved almost directly across the street from a hospital.) My mom was going to pick me up and drive me to the hospital, but my arm was going so intensely that I didn't want to wait for her.

I got to the hospital, went through the normal stuff (gave them my name, birthday, etc.) and went into a room to be taken care of. In the room, they took my vitals - blood pressure, temperature, pulse - most of which had to be done on my left arm, since the right one was shaking violently. They asked if I was in any pain - which I was, but mostly from the sore muscles from the violent shaking - and asked how much on a scale of 1-10. They asked again why I was there, at which point I gave them more information about the situation. They asked about allergies, of which I only have seasonal allergies. All of the normal stuff when going to the hospital (unfortunately, I know this procedure all too well.)

I was taken to a bed, where I was given an IV (also in my left arm.) Shortly after, unrelated to the IV, I started feeling some pretty intense pain in my right arm from the muscles contracting and expanding so quickly and violently. (It didn't help that I was in the gym on Tuesday working my arms.) Eventually it got to the point where it was not only my arm, but my side, (abs, lats, etc.) my shoulder, and my bicep - which I know is part of my arm, but it's usually just my hand and forearm; It usually doesn't go up past my elbow. It got so violent that my mom actually took a video of it on her phone.

It was by far the most violent and painful partial seizure that I have ever experienced. At 8:00am, 45 minutes after it started, the seizure finally stopped. For quite some time after it ended I was still wincing in pain from the seizure, and was extremely tired. I sat with my eyes closed, even answering questions from the nurses and doctors without opening my eyes.

Eventually my arm felt almost like it was not even there, When I went to move it it felt almost weightless, but at the same time was extremely sore. If I bent it too far, or straightened it too much, it would hurt, so I had to let it sit at a very specific angle.

I had told the nurse in the first examination room that I was starting to wean off of the Keppra that I have been taking, so they later gave me 1500mg of liquid Keppra, to hopefully prevent further seizures, and gave me a prescription for Ativan in case I had another extreme seizure. For those who don't know, Ativan is used an emergency drug for seizure that last extremely long and/or are extremely violent. My prescription says that I can "take 1 tablet every hour as needed for seizure" with a "maximum daily dose of 3 tablets." If I am still having issues after using those 3 tablets, I am to return to the ER. (Hopefully I don't need any of them.) The doctor also told me that it will make me extremely tired if I need to use it.

Just like Thursday, I again slept most of the day, waking up every couple of hours to eat and because my body isn't used to being asleep during the day. (Not since I stopped working at the hospital at least.) Later in the evening, somewhere around 8pm, I had another small and short seizure that only affected my foot and lower leg. It only lasted 5 minutes or so, maybe less, so it wasn't too bad.

Right now (early Saturday morning) the entire upper right quarter of my body is sore. My side, my arm, my shoulder, and even my back. My leg is a bit sore from Thursday's seizure(s), and the small seizure last night, but not nearly as bad as my upper body.

Friday Morning's seizure:

Going Forward

Now I am supposed to return to my previous dose of 2000mg of Keppra each day, and I need to follow up with my neurologist this coming week. From talking to him in the past, he wants me to try a medicine called Vimpat next, but after looking into it I found that it is a controlled substance. From what I've heard, a paper prescription is required for every refill of a controlled substance, which would mean that I need to physically go to his office every month to get my refills.

We have talked about some other options in the past. He mentioned Topamax, but I have heard nothing but bad things about Topamax, so that's another one that I don't want to try unless absolutely necessary. He has also mentioned Zonegran, which some of my friends are on, and I want to try that first. Last time we talked he was pretty much set on Vimpat, but he usually listens to what I want so hopefully Zonegran will be my next try.