In 2010, Sara Peters had a proposition for her doctor: Admit her into the hospital until one of her epileptic seizures was caught on camera. The 39-year-old New York-based journalist recalls telling her to hook her up to an EEG and not let her leave until she'd had one—a first-time request for her doctor.
At the time, Peters estimates that she was having a seizure every other week. She had previously been lugging a giant box of electrodes home from the hospital, which completed ambulatory EEGs—at-home electroencephalogram recordings that can last over a number of hours or days. Routine EEGs provide only a 20 to 40-minute sample of the brain's electrical activity, so if a patient's epilepsy waves occur only once every three or four hours (or if they only happen at certain times of day) a regular EEG might not record them. Though she was in the comfort of her home—where she could "go about her day as though she didn't look like a sock monkey"—this method was not working. She wasn't actually having seizures while she was having the EEGs, so they weren't being captured.
Her request for camera time was granted. Peters, accompanied by her husband, Peter Aguero, spent five days in a hospital room at Columbia Presbyterian Hospital, hooked into the wall in the efforts to catch a seizure. She had about 30 electrodes spindling from her head, which she says were stuck using an epoxy substance that takes "all kinds of different chemicals" to remove. She also had an electrode with a long cord taped to her face to capture facial convulsions.
The hospital unit she stayed in is called an epilepsy monitoring unit, Stephan U. Schuele, associate professor of neurology at Northwestern Medicine, tells me. He says they're required to provide around-the-clock supervision, so someone can run in the room the moment a patient has a seizure.
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"They didn't try to stick some drugs in me or anything. It was just that they were progressively giving me smaller doses of my medication, and I was taking it on myself to do things that bring me closer to the seizure threshold," she says.
It worked. On the fifth day of this routine, Peters finally had the seizure, a camera capturing the convulsions she had in bed. The doctors and nurses rushed in, and after the convulsions—which took about 60 seconds—were over, they gave her a generous shot of sedative to put her to sleep and calm down her brain. This spared her the postictal state (the recovery period after a seizure), which she said is the worst part of the experience since it entails a terrifying 25-minute system reboot which leaves her with a "deep feeling of disquiet for days."
And then she watched the video with her doctor. "Capturing seizures is only one of the most rewarding things in changing the course of treatment in these patients. Above all, if they achieve a different diagnosis, we can actually say you do have epileptic seizures, you don't have epileptic seizures or you do have generalized or focal epilepsy," Schuele says. "Otherwise, it's very difficult, because the abnormalities we see otherwise on EEG between these seizures are sometimes not clear cut. So it's very rewarding and almost in every patient, it changes the way we can treat them and the confidence with which we can treat them and also the aggressiveness with which we can treat patients."
Catching a seizure can indicate whether a patient has generalized onset seizures—starting in both halves of the brain—or focal seizures, where epileptic activity starts in just part of the person's brain. Well-selected patients with focal onset seizures who did not respond to two or more medications may become surgical candidates, which is often the only realistic chance for cure, Schuele says.
Peters was not a surgical candidate because—as she understands it—she has both generalized onset and focal onset seizures at the same time. When asked if she would recommend the route to other epileptics, Peters says she only knows one other epileptic, then pauses thoughtfully.
"I can't describe how incredibly catastrophic a seizure is. To voluntarily put yourself through it—to say to yourself, 'I'm going to go have a seizure today'—is a really difficult thing to decide to do," she says. "I don't like having incomplete information, so I knew that whatever we were doing, I wanted my doctor to have what she needed, and I knew she wasn't getting it beforehand." It's a harrowing condition, and she recognizes this may not be suitable for each patient. "For the most of it, what I remember is mostly terror, like animal terror, and that's just too much to go through if you don't want to," she says.
Peters' husband shared the harrowing account of their experience in the epilepsy monitoring unit in a popular Moth story in addition to taking the TEDMED stage with his wife in 2013. By making their narrative public, Aguero receives messages from all over the world, but he says people seem to want him to say his Peters' condition is all cured now.
"Really the truth of it is that this is her chronic condition that she's probably going to have the rest of her life. Every single day and night, there's a threat. There's no trigger," he says. "We can be in the middle of a conversation. She could have gotten a good night sleep, eaten well, doing everything she could, and it still happens. She could be somewhat more reckless [in] her behavior, and nothing happens."
Aguero notes that his wife has changed many things about her life due to her chronic condition. He says she hasn't had an alcoholic drink in almost ten years. She goes to bed early, and she tries to meditate before she sleeps; she doesn't take baths, nor does she swim unless someone is watching her, despite loving the sport.
"She has many restrictions she's put on her life, but it doesn't always stop the seizures," Aguero says. Schuele says it takes courage to seize these seizures up front.
"It's important to understand your disease and what dangers are potentially related to the seizure. To see your own seizure, you realize that that is really a dangerous situation, or you really should not be driving, that you do not realize having just had a seizure," Schuele says.
"I'm trying to work hard to have a relationship with it because it feels like there's this demon lurking inside, that at any moment is going to leap out and take over for a while, but I am trying to work out why and what this demon guy is all about?" Peters says. "What's he trying to tell me? What kind of relationship can we negotiate? Because this is a part of me."
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