I can't believe that I have to write another one of these posts.
On Wednesday, May 27, driving on my way to work, I didn't feel right (and this honestly hit me fast. Like, "WTF?" fast). Usually before I get seizures, I get auras/flashes, my thumb will twitch, then my thigh will twitch. That progression usually takes 5-10 minutes, so I have time to realize what's happening and get to safety and get help.
This time, without warning, my thigh began twitching. While I was driving. My entire life, this has basically been my greatest fear. But, I pulled over, still seizing, called Dave and told him what was happening. I was able to dial and talk on the phone and explain what was happening to me, which is amazing. The seizure actually stopped while just was still on the phone with Dave. He left to come get me and I focused on my breathing and stayed calm while waiting for him. It sounds funny (I know it's not), but I remember thinking, "Well, that wasn't safe..."
I still didn't feel right. Dave and I got back to the house and decided that we should go to the hospital. I needed to get checked out. My leg still felt numb and I just had this feeling it was going to happen again. And I was right. My leg began twitching again and Dave talked me through it. He helped me focus. Thankfully, it only lasted 30 seconds.
We walked into the ER and explained what happened. Considering I had seizures so close together, they brought me back pretty quickly. Unfortunately, while I was getting checked out, my leg started twitching again. I remember thinking that I felt like they weren't moving fast enough to get the seizure under control and I was getting frustrated. They just kept telling me to relax and in my head, they were dilly dallying around the room not doing anything about the seizure and just going through the rest of the routine tests. Since I got frustrated and panicked though, my seizure turned into a full fledged seizure and I started convulsing. It only lasted about two minutes. They got the medicine in me pretty quickly through the emergency IV (liquid Ativan I'm assuming). I remember making eye contact with Dave, him telling me he loves me and that everything was going to be okay. I tried to say, "I know" back to him, but it came out more like, "Ow."
I stayed the night in the hospital. They did the routine EEG (which came back normal only 4 hours after a seizure?), called my neurologist (who actually interrupted my EEG), and I was seen by three different hospital neurology team people to be assessed.
The final decision was that the Zonegran isn't working like it's supposed to and that I should switch to Keppra. So, right now, I am weaning up to Keppra 1000mg 2x/daily. I will take this with the Lamictal XR and wean off the Zonegran completely. They want me to make an appointment with my GP and my neurologist now that I've left the hospital as well as a follow up. So far, the only side effect from the Keppra I've noticed is that it's made me exhausted. Pretty much all the time. I'm hoping that once I'm off the Zonegran though, that it'll change.
I'm going to be okay. It sounds crazy, but I came out of this feeling like we are finally going to get this figured out. I can focus on the fact that it happened and that it sucks or I can focus on the fact that I'm OK, I have a family that loves me and overall, I have a lot to be thankful in my life. This is no where near the end for me. My life does not stop here.
My husband is extraordinary. I love him more than anything. I would not be as strong as I am without him by my side. My baby boy is my world and I know that epilepsy or not, he is counting on me. He loves me unconditionally and still needs me now.
You'll still be hearing from me.
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