What It’s Like To Have A Grand Mal Seizure (And Why I’m Trying to Have One)

I have 34 electrodes glued to my head, 34 10-foot wires streaming from my head, plugged into the wall. My head is wrapped in cheesecloth. I’m in the hospital, and I’m not leaving until I have a grand mal seizure.

An epileptic grand mal seizure is horrible. Horrible to witness, even more horrible to experience. When I have one, my head turns to the side, tilting creepily; one arm folds in on itself and starts trembling; my legs stiffen and kick; my eyes pop open too wide then roll back; my face settles into this gruesome rictus and I foam at the mouth for a few minutes — very long minutes. Once the convulsions stop, I enter what they call the postictal state. It’s analogous to a computer rebooting after a crash, starting with the most critical systems: First, my breathing normalizes, then some of my motor skills come back, then my fight-or-flight mechanism kicks in. I can’t talk, but I can run and grunt and push people away. Only the most primitive needs or desires seem to function. (Vincent van Gogh was epileptic, and some believe that it was during one of his postictal states that he cut off his ear and didn’t remember it later.) I’ve done some strange things during postictal states — things you would never believe come from my usual demure self.

When I finally come to, I feel fear — an all-encompassing, inescapable terror. I don’t know where I am or who I am. I don’t know if I’m dying. And sometimes I’m hurt. I’ve come out of seizures with bleeding gashes down my back. I’ve come out of seizures with a dislocated jaw. And, of course, I hate it.
But I want to have this dreaded grand mal seizure here, in the hospital, because my epileptic medication has recently stopped working. Which means that I’m having more grand mal seizures than ever. They’re more severe, less predictable. The doctors can’t stop it, and they don’t know why, because in all of those tests they’ve never caught me in the act of having an actual grand mal seizure.

So now, connected to an electroencephalogram (EEG), I’m hoping they can monitor my brain activity, figure out what kind of seizures I have and where in my brain they come from, and, hopefully, how to stop them. In these last few months, I can no longer leave the house alone, cross the street, take the subway, take a bath or hold a baby, because I could have a seizure. Of course, I can’t go to the office or socialize. My husband is going crazy. When he’s at home with me, he stares at me, biting his fingernails and nearly jumping out of his skin every time I move, thinking it’s a seizure. When he’s out, he can’t stop thinking that when he comes home he’ll find me dead.

My epilepsy is controlling our lives. That’s why now I have to do everything in my power to make the seizure happen. So while the doctors will be weaning me off the medication and periodically shining strobe lights in my face, I’ll be depriving myself of sleep — demanding three pots of bad hospital coffee with every bad hospital meal, staying dehydrated, and doing all the unhealthy things I generally don’t do.

But nothing’s working. I wonder if I can simply think myself into a seizure. I wonder if by staring at the computer monitor that shows real-time readouts of my brain activity — a quirky scratch for each electrode — maybe I can just make all the lines go wonky.

That doesn’t work either. I wonder if I think really hard about seizures, I’ll have one. So I take out a book on epilepsy and learn that in the past they thought epileptics were possessed by demons. They performed exorcisms on us. They threw us in asylums, sometimes lighting us on fire during a seizure to make sure we weren’t faking.

I go back to stare at the monitor, glaring at the lines, willing them to do something, anything — but nothing. After five days, I’ve still had no seizure. But I’m trying to stay positive.

On the night of the fifth day, my husband comes to visit. He’s proud of me for doing this, but at the same time he feels bad that I’m here. Truthfully, he’s also relieved to have a couple days off of nursemaid duty. I feel a bit more human with him here, more upbeat. But when I joke around with one of the gigglier nurses, my husband gets angry.

“You’re not taking this seriously enough,” he says. “Of course I am,” I retort. “If I wasn’t, why would I be here, doing this?” We argue until the end of visiting hours. When he leaves, I break down. I’ve had it. For five days, I haven’t left the room or taken a shower, and I’ve barely slept. I’m so tired — physically, mentally, and emotionally.

And I’m scared. Even though I desperately want this seizure, I’m also scared of what might happen. What if the EEG doesn’t find anything? What if it doesn’t work? What if the power goes out? What if the machine malfunctions, and the neurologists remove the wrong part of my brain?

I get out of bed (which is dangerous, because I could fall) and walk to the monitor. Taking it in my hands, I lean my forehead against it and whisper aloud, “Please don’t fail me. I’m sorry I’ve complained about you. I know I’ve been unappreciative, but I need answers now, and you’re the only one who can give them to me.”

By day six, I can hardly carry on conversations with my visitors because I’m sleep-deprived and my neurological integrity is breaking down. I feel myself getting more frayed as I sit on my bed, talking to my friend … and then it’s nighttime. I’m alone. I try to sit up in bed, but my arms are incredibly weak and sore. I’m confused. The nurse tells me I finally had a seizure. But I don’t remember anything. She said that once the EEG got what the doctors needed, they gave me medicine to knock me out, and I didn’t do anything crazy.

“They got what they needed? On the EEG?” I smile weakly. She nods and tells me they’ll be back tomorrow. When my husband comes, I tell him the good news. He rushes over, collapsing on top of me and starts hysterically sobbing. The nurse actually rushes back in to make sure everything’s all right. My husband, still crying, starts hugging the nurse, and she starts crying, and I start crying, because we’re all so relieved.

The next day, several doctors and many residents come to my room with excited grins. Apparently, they say, my brain has simultaneously been having two different kinds of seizures: It starts as a partial seizure, then spreads to the rest of my brain like a generalized seizure. In addition, I also have occasional myoclonic spasms and two recent absence seizures, so I am an exceptionally rare case. (My brain is an overachiever.) I am prescribed a combination of two medications to treat all forms of abnormal activity. The doctors feel confident. I feel more hopeful than I have in months.

1 Comment

  1. I have been there myself. I know exactly how you feel. I lived every day praying and hoping I don’t have a seizure. Then when I was admitted to the the unit I hoped I would. When I finally had one I danced in my hospital bed. When my neurologist told me I qualified for the brain surgery like I hoped for, I cried and cried tears of joy and relief. I am sending you hugs and confidence that you will never have another seizure! Angela

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