I would like to talk about it.
I was born 12 weeks premature, and a lack of oxygen during my birth cursed me with epilepsy. My seizures, as far as I can remember, went unnoticed until I was 6, but looking back on them my mother thinks she can remember me having them earlier. I have temporal lobe epilepsy, and experience complex partial seizures.
Let me describe my seizures for you.
First, I experience a feeling called an aura. It feels like a pressure, right behind the bridge of my nose, like I’m holding back a yawn. There is a sort of spinning feeling. Not a dizzy feeling or anything, but like my head has been opened like a CD player and there is a disk spinning right between my eyes. Meanwhile, saliva gathers in my mouth, because if I swallow the aura lasts longer. When I was younger, I used to see faces or hear sounds when I had an aura. Well, not really see them, they weren’t in front of my eyes, but they would appear in my imagination. That facet of the seizure disappeared when my imagination dwindled, I suspect.
Not every aura comes before a seizure, and not every seizure is prefaced by an aura. Up before the surgery, I was having at least 3 auras a day, independent of any seizure. When I did have seizures, I wouldn’t remember them. They are complex partial seizures, so I am not jerking about uncontrollably on the ground. I don’t know what I look like, but my parents report that I sort of just phase out. I stare, and it becomes obvious that I’m not really there. I stiffen up, and I turn my head to the left. I make a scratching motion with my left hand. Sometimes I collapse. Once, I was up at the alter at church receiving Communion, and right before the priest got to me I fell over on my side. My friend’s mother joked that the priest should have taken the chance to cast the demons out of me.
My sister adds: “you start by staring off into space. then you sort of turn to the right and start pursing your lips like you’re trying to suck in your cheeks. you pull up your left arm and tense your hand. You tremble slightly with how tense your muscles are. If someone tries to stop you from walking away, or from doing anything, you grab their arm, turn to them, and begin bending it back, staring at them with lifeless, unseeing eyes.
…You did that to me in the middle of a movie theatre and it was the scariest goddamn thing EVER.”
I almost always left the room while I was having an aura, so some of my most memorable seizures occurred while I was in the middle of leaving. I would feel the aura, and get up and walk out, all without realizing that I was doing it. Whenever I had a walking seizure, I would already be in the midst of a seizure when the aura came. They just felt like falling asleep. I would leave class without even knowing I’d gotten up, and once I even tried to get out of a moving car!
Having a seizure at school was always a riot, they would take my blood pressure, put me in a wheelchair and wheel me over to the nurse’s office. I was always exhausted after a seizure, so I would nap until I felt well again, or until my mother came to get me.
Now some medical stuff. From the age of 6, I was on Tegretol, until I was 15. I also took Sabril (which is not FDA approved, I was in Germany at the time) and Topamax at different times. When I was 15 and taken off the Tegretol, as it was doing more harm than good, I went on Keppra and Lamictal, and I am still on those today. My seizures were intractable, meaning nothing was working. So I went in 2005 and got a temporal lobectomy.
Some of those diagnostic procedures that I had to go through were ridiculous. The infamous Wada test, which is used to establish which cerebral functions are located in which hemisphere, involved having a catheter threaded up from my femural artery into my brain. They put half of my brain to sleep, asked me questions, put the other half of my brain to sleep and asked me more questions.
The exact surgical procedure I went through is referred to as “grids”, basically an EEG on the surface of my brain. The Wada test, and other MRIs and EEGs and scans of all sorts suggested that my epilepsy was focused on the right side of my brain. The surgeon implanted strips and grids of electrodes on the surface of my brain, and they monitored my brain activity for a week in the Epilepsy Monitoring Unit at Johns Hopkins. Then, when they finally took the electrodes out, they took out the offending piece of brain, my entire right temporal lobe, including the hippocampus and the amygdala.
That didn’t entirely work, though. Due to the brain not being as color-coded as they’d like, the surgeon left a tiny piece of hippocampus in there. I had a breakthrough seizure a year later, and I’ve had one every spring since.
Except this past spring. I’ve been seizure-free for over a year. There is hope yet for getting a driver’s license!
Thanks for reading, if you did. I’ll post better stuff later.
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