When she was fifteen, Jen had a grand mal seizure—she had a convulsion and fell to the floor, unconscious. She had many EEGs and an MRI, all of which were interpreted as normal, but finally a detailed investigation by an epilepsy specialist revealed a clear epileptic focus in the left occipital lobe and an area of abnormal cortical architecture in the same area. She was put on antiepileptic drugs, and these prevented further convulsions but did little to help with her purely visual seizures, which became increasingly frequent, sometimes occurring many times a day. She said they could be precipitated by “bright sunlight, flickering shadows, or brightly colored scenes with movement and fluorescent lights.” This extreme sensitivity to light drove her to a very restricted life, an effectively nocturnal and crepuscular existence.
Since her visual seizures did not respond to medication, a surgical approach was suggested, and when Jen was twenty, she had the abnormal area in her left occipital lobe removed. Before the surgery, while the occipitotemporal cortex was being mapped by electrical stimulation, she saw “Tinkerbell”and “cartoon figures.” This was the only time she has ever had complex visual hallucinations; her visual seizures are normally of a simple sort, with the spinning ball to the right or, occasionally, a shower of “sparklers” in this area.
The immediate effect of the surgery was very good. She was thrilled that she no longer had to stay inside, and she went back to teaching gymnastics. She found that a very small dose of antiepileptic medication could now control most of her visual seizures, although she remained sensitive to stress, missing meals, not getting enough sleep, and flickering or fluorescent lights. Her surgery left her with blindness in the lower right quadrant of her visual field, and although she can navigate pretty well in the world with this blind spot, she avoids driving. Her symptoms returned, though less severely, a few years after the surgery. She says, “Epilepsy is a major challenge in my life, but I’ve developed strategies to manage it.” She is working now on a PhD in biomedical engineering (with a focus on neuroscience), not least because of the intricate ways in which a neurological disorder has affected her own life.
When the epileptic focus lies at higher levels of the sensory cortex, in the parietal or the temporal lobes, the epileptic hallucinations may be much more complex. Valerie L., a gifted twenty-eight-year-old doctor, had what were called “migraines” from an early age—one-sided headaches preceded by twinkling blue dots. But when she was fifteen, she had a new, unprecedented experience. She said, “I had run a ten-mile race the day before . . . the next day I felt very strange. . . . I had a six-hour nap after a full night of sleep, which was most atypical for me, and then I went to temple with my family: it was a long service, a lot of standing.” She started to see halos around objects and said to her sister, “Something weird is happening.” And then a glass of water at which she was looking suddenly “multiplied itself,” so that she saw glasses of water wherever she looked, dozens of them, covering the walls and the ceiling. This went on for perhaps five seconds, “the longest five seconds of my life,” she said.
Then she lost consciousness. She came to in an ambulance, hearing the driver say, “I have a fifteen-year-old girl with a seizure,” and then realized with a start that
When she was sixteen, she had a second, similar attack and was put on antiepileptic medication for the first time.
A third grand mal seizure occurred a year later. Valerie saw vague black shapes in the air (“like Rorschach ink blots”), and as she continued to look, these transformed themselves into faces—her mother’s face and the faces of other relatives. The faces were motionless, flat, two-dimensional, and “like negatives,” so that light-skinned faces were seen as dark, and vice versa. They had wavering edges, “as if enveloped in flame,” in the thirty seconds before she had a convulsion and lost consciousness. After this, her doctors changed her antiepileptic medication, and she has had no more grand mal seizures since, though she continues to get visual auras or visual seizures, on average twice a month, more if she is stressed or sleep-deprived.
