Ongoing challenges

I've read some horrifying testimonies that epileptics have shared and doctors have witnessed. I'm so thankful that my experience with epilepsy hasn't mirrored some of those more closely. For instance, its common for people to "personally wet themselves" during a grand mal seizure - and I'm relieved that I didn't do that. I'm also relieved that I never had a seizure while driving, nor did I collapse and convulse while walking through the quad of my college campus. I didn't see visions of Tweety Bird everytime I closed my eyes (in a book I read recently, someone saw Tweety Bird whenever they had a seizure) - and, aside from the episodes that occurred while I tried to sleep, I had no lapse in thought or consciousness that other people could observe.

In fact, I can describe my most frightening seizure as though it were yesterday - and I'll do my best to help you understand what I believe was going on in my brain. As I wrote in a prior blog, the grand mal seizure began in the left frontal lobe before it spread to the rest of my brain. If you don't recall, the left frontal lobe controls speech and arm movement. When the seizure began, the aura that came first felt like a headache was coming on. I felt claustrophobic and pulled myself away from my fiance, and he knew right away that I was about to have another episode. At first, he kept talking to me, trying to keep my eyes focused on him, but the seizure was too much for me to focus on anything. It was as though my brain was on overload - and although there were no racing thoughts or images - there was a sensation that I was being smothered. I kept repeating "OK, OK, OK, OK..." I was in such a state of fear, but I tried to compose myself, so I got off the couch and started pacing the room. My mom, dad, and fiance all watched me closely as I tried to talk myself out of the seizure. I was hyperventilating, and after a few moments I became fatigued and laid on the floor. With my dad on one side and my fiance on the other, I breathed heavily. My head felt like it was about to explode. Before I lost my ability to speak, the last thing I said was, "We need to go! We need to go!" My dad asked, "Where?" But I couldn't answer him.

Without any prompting, I got up and started to pace the room again. This was by far the strangest moment of the evening. Up until that point, I'd never had anything that came close to an out of body experience. However, I felt as though I was outside my body, watching myself - because I had absolutely NO control of what my body was doing. There was a red blanket on the floor - and for no reason, I squatted down and started knotting up the blanket. My dad told me later that it looked as though I was planting a garden. After playing with the blanket and rolling up the corner of it, I hobbled over to my fiance and began to touch his lips with the blanket. I did the same to my parents. I could hear my mom utter, "OK...?" I stood up again, and I don't remember exactly what my arms were doing, but they were sort of flailing about in any which direction. I realized that my arms were moving without me controlling them, because I was fully aware of what was going on at that point. My dad and fiance got right up next to me, and as my dad held my shoulders, he asked, "Who am I?" In my head, I said, "You're my dad," but on my face, I only wore a smile. My verbal response could only be communicated as a smile. He asked a couple more questions, and again, I only smiled each time. The only explanation I can give is that I didn't want my family to worry about me, so I wore a smile even though I couldn't speak. It was immediately after this that my fiance ran upstairs to get my brother and my insurance card. I couldn't really put my flip flops on by myself, so my fiance put them on for me, and he and my brother held me up as we went out to the car.

The car ride was mostly a blur. I was aware of what was happening most of the time. I knew where we were, but I couldn't understand what anyone else was saying. I blacked out sometime before we reached the hospital, but even though I was unconscious, my body kept doing things on its own that didn't make sense. For instance, I tried to kiss my dad on the lips, and I continued making arm gestures in the waiting room. I was obviously seeing something - because I was pointing at something and following it with my finger right before the convulsions began.

All I can say is, thank God I didn't wet myself.

I was out for about four hours - and when I did wake up, I was coherent enough to beep the nurse to have the cathater taken out. Yet, I was still incoherent enough to not care WHY I was in the hospital or where my family was. The EEG taken the next morning was able to pick up seizure activity, which means that I was having seizures all night and much of the next day, although the medication they put me on controlled the symptoms.

I said that I'd try and explain what I think was happening in my brain, and I meant particularly in regards to the blanket incident. I was knotting up a blanket on the floor, playing with it, right before I touched other people's lips with it. This reminds me of a childhood memory I have of what we affectionately refer to as my smell pillow. My smell pillow was a routinely slobbered on object that I had to have at all times - and my habit was to rub the pillow against my upper lip before going to sleep. I'd venture to say that this "oral fixation" I had that night about other people's lips and the blanket on the floor may have been an automated response from my brain, based on what I used to do as a child when I needed to be comforted or lulled to sleep. This is only a theory, of course, but it makes some sense.

Seizures are difficult to understand and explain, although the biology of it is fairly simple. It all has to do with neurons misfiring, and the misfiring communicates to other parts of the brain, creating chaos as a result. The response of the body cannot be generalized, because even convulsive seizures vary. I'll go more into the technical terms for the different types of seizures later. For now, though, I'll leave you to process the information I've already shared with you about grand mal seizures from a personal point of view.