Surprise Post-stroke Seizures

You know, one of the IMPORTANT things that my Rehab Team forgot to tell before my discharge was that I MIGHT have a seizure! I think that's common....2%-33% of people who have a stroke may have one (or more). Five months after my stroke, I was doing my warm-up speech with my communication partner, Square, when my thumb on my stroke-side started move involuntary around. I showed my thumb to Square..."Cool!" said Square, then my other fingers started twitching...."WOW!" both of us said. Then, a pain started in my arm....not JUST a pain...a pain that was unbelievable...I have a high threshold of pain...BUT, this was the most pain that I ever had...one that I didn't think I could withstand. Square told me to stand-up, thinking that maybe I was pinching a nerve. So, I stood up...but that didn't help. Then, I thought that maybe I was having another stroke, because my mouth started to contort.

At that time, Square told me that I said "I think I'm going to be sick". I don't remember that. Actually, I didn't remember anything until a man said "Judy"... a few inches from my face. I was startled! And, tried to push away from the man...which was difficult because at that time I was in the corner of the floor and the wall squishing in the coffee table and my chair.

Then, I heard Square said "It's okay..you had a seizure and I called 911." I was confused. I was realized that I was in living room...not knowing what these 3 people in my house were doing! "We have to take you to the hospital", one of the people said. "I have to go to the bathroom." They allowed me to go.

But, I took too long. Because, I had a mess that I was trying to clean up. Sometimes, when you have a seizure, your bladder and bowels get go.

ANYWAY, I went to the hospital, got checked out and was referring to a neurologist. The neurologist discussed my seizure and treatment for them. I liked him. He was understandable, fact of view and had a sense of humour. He explained the seizure like this..."Your neurons are pissed off." Simple!

Their (my neurons) were saying..."We are NOT dead! So, get out of here!" This, of course, was to warn invading neurons who wanted more space.

So, I took my gabapentin and carbamezepine faithly (ALmost*). Last Sunday, 2 weeks before when I was to see my neurologist to wean off gabapentin, I had another seizure in CHURCH!!! But, it wasn't too bad....I didn't alarm the congregation or ruin the Minister's sermon (I don't think!). Why? My thumb started acting up again. My thumb twitched. "It can't be" to myself. Then, it twitched again..."I'm going to have a seizure. I have to get out of here."

I headed to the back of the church and whispered to a woman that I knew. "I think I'm going to have a seizure". She put her arm around me and guided me to the hall outside the sanctuary. "Tell me what I should do."

"First, help me to the floor and put me on my side. And, I might pee myself."
She put a cushion under my head and put a blanket on me. I was starting to twitch on my legs. "Is there someone I should call?"
"Yes, Square." I told her our telephone number and she called for Square more instructions. Of course, Square jumped to a taxi to come to the church.
"Do you mind if I ask for a nurse?" I nodded.

This seizure was different. I didn't have the pain in my stroke side and I remembered the whole event. My legs twitched like a dog hindleg trying to get a flea! My face was contorting and my head was twisting toward the cushion and I was worried that I might be smothered. AND, the noises from me sounded like a rabid dog. Finally, I realized that the seizure was passing.

I was exhausted and out of breath....just like I ran a marathon. I tried to move my stroke-side arm but it didn't move. Then, I tried my arm....that didn't move either. I didn't know if I had another stroke. I rested on the floor and the ambulance team arrived. After checking me and waited for me to rest, they helped me to sit up. My arm and leg was getting stronger, but I couldn't move my fingers. After resting, I got stronger and got to my feet with support. My ambulance team took me to ER and Square followed. You know, I try everything to get Square to church!

My experience made me think about kids that have a seizure AND remember it! What a terrifying experience that must be. That was all I could think about. It would be terrifying for the parents the first time. AND, the friends of the child.

So, now I can't drive again until.....????
My next appointment with my neurologist is next week. I will have to confess that I stopped my noon carbamepine. I'm supposed to take carbamepine in the morning, noon and in the evening, BUT I stopped the noon pill when I was Ethiopia in January (see... Square and Circle Adventures). I forgot my pills in Halifax! And, while I was trying to figure out how I would get pills I cut off my noon pill for I would have a few days supply. Then, when I finally a Doctor in Addis to prescribe carbazepine to me. I decided to stop the noon pill. Believing that my ONE seizure was the ONLY seizure would have, AND knowing that my neurologist was going to take away gabapentin anyway....I didn't see the problem. When I was emergency on Sunday, my carbamazepine levels were in the therapeutic range. But, my neurologist doesn't believe in the "range"...."If you are still having seizures then you need more carbamazepine; if you're seeing double (vision), you are taking too much." Simple!

Total time to write this: 2 hours and 40 minutes