My first two seizures

The first part of my medical journey is about neurology, epilepsy, and uncertainty. I have found that uncertainty is scarier than a diagnosis, even when the diagnosis is brain cancer.

This story is about my first two seizures and what they felt like. It is important for me to tell this story because early in my diagnosis I told myself that there was nothing worse than a seizure and if I could have a seizure and live through it, then I can do anything.

Later, when I had to have a craniotomy (brain surgery), I told myself that if I could handle a seizure then I could have brain surgery. This reasoning may sound ridiculous since more people have seizures than have brain surgery, but at least with brain surgery you are asleep or under heavy sedation.

A seizure feels like fear, panic, and anxiety, and it comes at you from nowhere. You can't hide from a seizure. Seizures will take away your driver's license and your confidence to be alone. A seizure is a controlling and abusive authority figure who convinces you that you can't leave your house or do anything worthwhile because no matter what you do the seizure will get you. A seizure is like a Chuck Norris joke come true.

One week before my first seizure (also known as my 29th birthday)

Friday, July 25, 2008, 1:50 p.m.

I had started my brand new job as a graphic designer for an architecture firm this week and had just gotten back to the office after lunch. While standing at my desk with Tyler and Jodie, my boss, I began to feel "funny"; the only way I can explain the sensation is dizzy and kind of "out of it." (I later found out this feeling is known as an "aura". Epileptics often experience various types of auras that warn them when a seizure is on the horizon.)

Before this day I had never had a seizure and I had no idea what was about to happen. At this point in time I was not afraid. I didn't know anything bad was happening and I wasn't in pain. I remember saying, "Um. I don't feel right. I am going to sit down." Jodie later told me that I had a blank look in my eyes so she gave me some space to deal with whatever I was feeling.

Looking back on the experience I know that I was really out of it because I didn't understand the passing of time. I have no idea how long I sat at my desk, but at some point the world felt like it was spinning in my head. I announced, "Just so you know, I am going to lie down. If I don't I will probably fall over." Not wanting to risk a fall, I slid out of my desk chair to the floor. I could instinctively tell that I needed to be on the ground. Tyler asked if I was OK and I said that I was fine; I just needed to lie there. But then things went horribly wrong.

All of a sudden my right foot began slowly jerking. The intensity increased and took with it my calf, then my whole leg. The muscles in my right leg became painfully tense so fast that they felt like the worst Charley horse in my life. (I have since learned that during a seizure people can get so rigid, and jerk so wildly, they can dislocate or break an arm.)

During this time I was making weird noises and I sounded like a whiney little kid. In my head I thought, "What the hell am I saying? Why do I sound like this?"

The seizure progressed and moved up my whole right side and my face twisted to the right. My cheek was pressed hard to the office floor and my body was vibrating and shaking. I could hear Jodie trying to talk to me but it sounded far away like I was asleep in a dream and she was trying to wake me up.

When I was fully twisted and in the most pain, a droning began far away in my body/head/mind. I couldn't see anything but my eyeballs twitched in their sockets. The droning pulsed, and became louder until all I could hear was its sound mixed with my incomprehensible moaning. I wasn't forming real words but I was thinking "No. No. No."

Then I went away.

From what I understand, Jodie called 911 and emergency medical technicians arrived within a few minutes. I was "awake" when they arrived but was not alert. They asked me a series of questions like, "Do you know your name? Do you know where you are? Do you know what year it is?" I still had a blank look in my eyes and my answer to each question was "No."

The company human resources manager asked me which emergency contact she should call and I responded "No."

I guess I was chewing a piece of gum before all this began and I was still chewing it after the seizure. The EMTs asked if I could give them the gum and I said "No."

I officially regained awareness in an emergency room and my memory of this time is cloudy. A doctor was talking to me and asked me if I had a history of seizures and I said no (but a serious "no"; I finally knew what I was saying).

The next thing I remember is Jodie being next to me. She filled me in on what happened. I remember thinking "No way! This all happened to me? Just now?" I was amused. Then I realized I needed to pee so I said to Jodie, "I'm going to go to the bathroom," and I sat up in the hospital bed. As soon as I sat up the dizziness came back. I still didn't know that I was having seizures, but I remembered the sensation from earlier and said to Jodie, "It's happening again.”

As soon as the droning began in my head I told myself, "Go to sleep!"

Then I went away.

It was fortunate that the second seizure occurred in an emergency room with a hospital audience. Originally the attending physician didn't think I had actually had a seizure. Why would I? I had never had one before and I was healthy. I was at my hospital (Kaiser), they had all my medical records, and I hadn't even complained about headaches.

From what I understand, the attending physician finally believed that I had a real seizure, thought, "Holy shit!" and sent me in for a CT scan of my head. This scan revealed two masses in my brain, I was assigned a neurologist, admitted to the hospital, and the rest is history.