In July 2009 while in my first trimester of pregnancy, I started having unexplained seizures. This is part 4 of the series that recounts that time. Read the previous entries here:
And I will stroll the merry way and jump the hedges first
And I will drink the cool clean water for to quench my thirst
I started the last entry noting how difficult it was to write due to memory loss. That issue also applies to this entry, perhaps even more so.
After I awoke from the first overnight in the hospital to the news that I had experienced two more seizures in my sleep, I was completely shocked. I sat up in bed and stared into space, deep in thought. The TV may have been on, and I think I feigned interest for a while. But I had so many questions running around in my head.
What if they can’t figure it out? What if this keeps happening? What are these seizures doing to the baby?
And most importantly, what do I look like when I’m having one?
Such a superficial and silly concern, right? But damn if I don’t still wonder about that. Truthfully, I don’t want to know. If it was ever captured on video, I’d destroy it without a second thought. I’m 100% positive that it’s horrible and frightening and disgusting. But there’s a sick side of me that’s a little curious…
Every once in a while that morning I’d look over at Tony and ask, “Did it really happen again? You’re not just effing with me?” I’m sure it wasn’t annoying and tedious at all for him to answer those questions over and over.
Okay. So what the hell now?
My neurologist, Dr. K, decided it was best to give me a mild sedative for now. This is not usually recommended for pregnant women. But the goal was to calm the brain activity in order to stop the seizures any way they could. At the same time she put me on an anti-seizure medication called Keppra. It’s a fairly new drug and the effects of taking it while pregnant are not well known. The few cases that are documented show that there should be no ill effect on the little one. At this point, the potential damage from another seizure was a higher risk to me and the baby than either of these drugs.
Dr. K was positive and confident that this was the way to go. But all I heard was:
“You’re unborn child will probably be fine while you take this.”
“Not much data with pregnant women.”
“We don’t really know.”
What were we supposed to say? ‘Oh heck no, I’m not exposing my kid to that POISON, I’ll just sit here and let my brain wig out some more.’ Or maybe, ‘Okay, that sounds totally awesome, let’s do this! I’m so pumped!’
We just had to go with it and see what happened.
For the next few days I was continuously monitored. They had a “sitter” in to watch me while I slept, which also allowed Tony to get some rest (although I’m sure he got very little). They ran more tests and repeated tests that were already run. They glued electrodes all over my scalp to record brain activity (EEG), and I wondered aloud if they could see all the useless celebrity gossip I have going on up there. The glue from the EEG stunk like paint primer, and I was rocking the futuristic Medusa look for a while.
I was really out of it. People came to visit, like Jenny and Danielle. They brought me books (which I still need to return, what an awesome friend I am). I don’t remember the two of them sitting down, if I was still rocking the stinky hair plugs, or if we had any conversation at all. But I remember seeing their beautiful faces as they stood at the foot of my bed, and feeling happy and grateful they were there.
One whole day passed without a seizure. Then another.
I remember the headache. I had one for days. I could barely open my eyes, it ached so badly. I thought maybe my brain had been fried. Turns out that when they drain spinal fluid during a lumbar puncture, sometimes the wound doesn’t heal properly and you get what is called a spinal headache. Just a note to you all: Don’t ever get one of those. My skull felt like it was too small and it was squeezing my brain like a vice. The treatment was to lay flat on my back for a while, not a difficult thing to do. And caffeine could help too, something I had been avoiding due to my delicate condition. My sister got me a medium iced coffee from Dunkin Donuts, and by god that was the most delicious beverage I have ever had in my life. I don’t remember much, but I will always remember that iced coffee.
The headache went away finally and I felt like a new person.
Another seizure-free day passed. The results of the EEG came back. They saw some minor activity in one area of my brain. So they would do an MRI, focusing on that area. Depending on those results, I could possibly go home soon. The fact that I hadn’t had a seizure since the first night was a good sign that the medicine was working.
The results of the MRI were good. The activity was there, but it was minor and nothing to be super concerned about at this point. On day 6 of my hospital stay, I could finally go home. It was a long, exhausting week. I was glad to go home, but I was also nervous. I’m sure Tony was even more scared. There were still no real answers as to why I had the seizures or if I would continue to have them. So for now I would go home to rest, where my husband and family would monitor and take care of me. And we would go back to the hospital next week to follow up with the doctors. All I could hope for was an answer and a solution. But the journey and the search for those things would be much longer than I expected.
To be continued…