“I’m feeling a little stroke-y,” the 33-year-old woman said to her friend Clare as they stood in her kitchen making pizza one evening. Clare looked up from the crust she was stretching. Her words were slurred, and for a moment she just stood there, unmoving, knife in hand. Suddenly she threw the knife up in the air. Her body stiffened, and she teetered. Clare caught her, then eased her rigid body to the floor. The woman’s face was a terrible gray. Her eyes were open but unseeing. Clare crouched beside her, terrified and uncertain what to do. After what seemed an eternity but was probably less than a minute, the body on the floor blinked, then gasped. Color flooded back into her face. Clare almost wept with relief.
“What was that?” she demanded.
“I don’t know,” her friend answered slowly, still looking a little out of it. “I think it was a seizure.”
Just over a decade earlier the young woman was diagnosed with epilepsy. But she’d had the strange episodes her doctors told her were seizures for many years. They were always the same: She would suddenly have a strong feeling of déjà vu, followed by a sense of impending doom and a sensation of falling, as if on an elevator dropping through space. Sometimes there was an odd chemical smell. She was awake throughout. She could hear everything and see everything, though sometimes she couldn’t speak. And then it would be over. The whole thing lasted less than a minute. The woman thought they were panic attacks, until she had one at work.
She was teaching a swimming class when, in the middle of a sentence, she stopped speaking. She just stood there, not moving, for maybe 30 seconds. That was no panic attack, a fellow teacher stated flatly. She made an appointment to see her primary-care doctor in Vancouver, British Columbia, where she lived. He referred her to a neurologist. An EEG showed that the electrical activity was slower in her temporal lobe on the left. A scan of the brain was unrevealing, so she was started on an anti-seizure medication. And other than that, her life went on as before. She could play hockey, hike, climb and do the open-water swimming she loved.
Every now and then, maybe two or three times a year, when she was very tired or stressed or she skipped a meal or two, she could still end up in that déjà vu, plunging-elevator moment. But she never lost consciousness — until two years earlier. She was with her mother when she suddenly stopped talking and slid off her chair. She woke almost immediately. Her mother took her to the emergency department at Vancouver General Hospital. The doctors there found nothing wrong. They weren’t sure what happened, but she seemed OK.
She was sitting at her desk at work a few months later and the strange déjà vu and dread hit her. The next thing she knew, she was on the floor, her cheek throbbing from a rug burn. A few days later she got a call. The security camera had filmed something she needed to see. She sat in the security office and watched herself that day, sitting at her desk, then going completely limp and sliding out of her chair onto the floor. After about 15 seconds she saw her body jerk and then, again, nothing. Finally, after another 15 seconds or so, the body on the floor started to move. Slowly she sat up. Her movements were tentative, as if she were weak or drunk. Seeing this, the woman was scared. She called her neurologist. “Something bad happened,” she told the nurse. Her neurologist increased her anti-seizure medications and then referred her to the Epilepsy Clinic at Vancouver General Hospital.
‘Do You Think It’s My Heart?’
She saw Dr. Chantelle Hrazdil at the Epilepsy Clinic. She went through the whole history of her seizures and how after so many years they suddenly changed. She showed her new neurologist the security-camera footage. She was on two medications, and she never missed a dose — she was certain of that. She took them every night. She was supposed to take them in the morning as well but found that the single dose at night was just as effective and left her less tired. “Do you think it’s my heart?” she asked her new doctor. Probably not, the doctor told her. There are seizures that can cause your heart to slow down or even stop and that can cause you to faint, Hrazdil explained. It’s called ictal syncope. But because her seizures were mostly in the afternoon or evening, it was much more likely that her anti-seizure medications weren’t lasting a full 24 hours. And it’s not uncommon for seizures to change over time.
When people think of epilepsy, of seizures, they often think of the dramatic events we see in TV shows, in which the patient drops to the floor and has convulsive movements of their arms and legs. These are known as tonic-clonic seizures. But there are other types of generalized seizures. One possibility was an atonic seizure, in which patients suddenly lose the use of their muscles — sometimes for less than a second — and fall to the ground. The only way to know for certain what was happening in her brain and body would be to capture the seizure on a video EEG. There was a Seizure Intervention Unit (S.I.U.) at the hospital, the only one in the province, Hrazdil told her. She would put her on the waiting list. But in the meantime, she needed to take her medications twice a day. And she couldn’t drive until she had been seizure-free for a full year.
The young woman left the office that day with mixed feelings. It was good to know what had happened to her. But not driving — that was tough. She resolved herself to watching the calendar and hoping. And then she had that seizure while making pizza with her friend. When she finally came back to herself, sitting on her kitchen floor, she realized that she would have to reset that clock again. It was depressing.
Inducing Seizures
Finally, she got a slot to be evaluated in the Seizure Intervention Unit. Once there, electrodes were placed all over her head and chest. To make sure she had seizures, she was titrated off her medications. Fatigue can lower the brain’s resistance to seizures, so she was kept awake for 24 hours. Meals were skipped; lights were flashed. Over her nine days in the unit, she had 12 seizures. Only once did she lose consciousness — on the sixth seizure. As the doctors watched her on video, they saw her body stiffen and then go limp. It was the EKG that showed why — her heart stopped beating for 10 seconds: She had a type of epilepsy called ictal asystole (I.A.).
I.A. is relatively rare, seen in fewer than one in 200 patients admitted to seizure units. The beating of the heart is controlled by the autonomic nervous system (A.N.S.). This system regulates the body’s processes that are not consciously controlled by us: breathing, sweating, blood pressure, digestion and, of course, heart rate. In patients with ictal asystole, the seizure focus extends into parts of the A.N.S., which in turn slows or stops the heart. These episodes are thought to be self-limiting, because the lack of blood flow to the brain stops the seizure, which then allows the heart to start beating again. Treatment starts with seizure control, through medications if possible. If there is a single point of origin of the seizures, a curative surgery can be considered. If neither is possible, then placement of a pacemaker ensures that the heart keeps beating throughout the seizure, though it does nothing about the chaos in the seizing brain.
Additional testing showed that this patient’s seizures originated on both sides of the brain; surgery was not an option. Medications had never fully controlled her seizures, so she was sent for pacemaker placement. Her last syncopal seizure occurred one month before her pacemaker was inserted in 2021. It has changed her life. She still has the occasional déjà vu, plunging-elevator seizure, but they don’t slow her down. She can drive. She can play hockey and hike. And perhaps most important, she was able to complete her training to become a nurse.
These days she works in the S.I.U. where her own diagnosis was made. At first, she wouldn’t tell others that she had epilepsy. The sense of stigma is so great, despite how common the condition is — one in 26 people develop epilepsy at some point. Recently she began to give talks at the S.I.U. about her disorder and her long road to diagnosis — proof that even with a seizure disorder, a normal and happy life is possible.
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