Aleisha Wilson was checking on a patient in a Cortland County nursing facility when she blacked out and collapsed during her overnight shift in 2007. A nurse found Aleisha just as she awoke from what she had called one of her “spells,” which she had kept confidential for many years. As a single mom, her job, driver’s license, and car were crucial to providing for four children. Now her secret was out, and in quick order she lost her job, surrendered her driver’s license, and gave away her Pontiac Grand Am. She spent the next 10 years applying for disability and public assistance benefits, raising three children to adulthood, getting her youngest ready to graduate high school this June, and seeing dozens of doctors about her spells. She now spends her days in a carefully organized Cortland apartment watching TV, playing with her black-and-white cat, Roscoe, visiting family, shopping, and having fewer worries about her spells that had become daily concerns.
Her blackouts were diagnosed as epilepsy last summer at Cayuga Medical Center, where Dr. Deana Bonno had recently arrived to direct the new Epilepsy Monitoring Unit, or EMU. Until it opened last June, no EMU existed in the Southern Tier. The nearest epilepsy centers were in Syracuse, Buffalo, and Rochester, where Dr. Bonno worked at the Strong Epilepsy Center. Aleisha spent three days at the EMU with 25 electrodes glued to her head while monitors traced her brain’s electrical activity. While examining hours of monitoring records, Dr. Bonno saw the signature bursts of brain activity indicating an epileptic seizure. After five decades, Aleisha finally got the answer to what was causing her blackouts and sudden falls.
Difficult to diagnose
Without long-term brain wave monitoring, epilepsy can be difficult to diagnose because infections, stress, concussions, and drug interactions, among other conditions, can cause seizure-like episodes. Epilepsy can be difficult to detect because many seizures last just a few seconds and go unnoticed by people having them and by those around them. That was the case with Aleisha, who recalls her mother describing the first blackout spell Aleisha had when she was about two. That day had been particularly hot when her alarmed mother saw Aleisha’s blue-green eyes roll up and stare blankly for several seconds, while the youngster did not respond to her name. A rush to the hospital found Aleisha had a mild fever, but no serious illness was detected.
“My mom said the doctor thought I had a viral infection and that had caused my blackout,” Aleisha recalls. “He sent us home, told my mother to check my temperature regularly, and if I did not improve in a few days to come back. The next day, I was fine.”
The blackouts continued during her childhood, sometimes as often as a few each week. Most were short and mild, allowing Aleisha to recall some of what she saw or heard when her mind blanked. Other blackouts were more severe, and she could recall nothing from them. Aleisha remembers she often felt overheated just before a spell, and a cool, damp towel on her forehead followed by a short rest was all she needed to recover and go on her way.
“I just learned to accept the spells as part of life,” she says. “I remember going shopping for my senior prom dress and having a spell. I went blank and fell to the sidewalk. A few minutes later, I was fine and went into the store to pick out my dress.”
After marriage and a first child, Aleisha’s spells worsened, and she drove to medical appointments across central New York and the Southern Tier to find treatment. If she sensed a blackout coming while she was driving, she’d pull over and wait for the spell to pass. The choice now frightens her for the danger she risked, for herself and others. Following several deaths in the family, including her husband, the frequency of her spells increased. She says her physicians concluded the added stress of those life-changing events was triggering her blackouts. Her medications were changed, but relief was temporary and the new drugs affected her sleep and appetite. A brain wave study to see if she had epilepsy was her next diagnostic test. Brain wave tests, also called electroencephalograms or EEGs, are considered the gold standard for diagnosing epilepsy. However, a definitive diagnosis often requires days of inpatient monitoring and a controlled reduction of medications, which may provoke a seizure.
Before having long-term monitoring at Cayuga Medical Center, Aleisha had short-term and outpatient monitoring that did not detect her epilepsy.
Care at Cayuga Medical
The long-term epilepsy monitoring at Cayuga Medical Center begins with Deanna Jacobs and Buffie Scott preparing a patient. The two EEG technicians, with nearly 30 years of training, keep up a soothing conversation, explaining to a patient what is happening as they attach 25 electrodes across the head and two cardiac monitors to the chest. When they are done, a rainbow dreadlock of wires hangs down the back of the patient’s head. In testing that can last up to seven days, the patient is tethered to a 25-foot-long connector that feeds into a computer to display and record brain wave activity. While the lines ripple across a computer screen, a video camera simultaneously records the patient’s every move. The parallel records allow the technicians and Dr. Bonno to see what a patient may have been doing when the EEG detects a seizure.
“Sometimes the patient’s eyes appear forced to look in one direction, and the head may turn forcefully. These movements can tell us what areas of the brain are causing the seizure,” Dr. Bonno says.
In Aleisha’s case, monitoring was completed in just three days – a goal many EMU patients might aim to achieve because no showers are allowed when the wires are attached to their heads. While patients are in one of the unit’s two private rooms, nurses trained in epilepsy care make regular checks and use a desk station monitor to watch over patients and respond to an alarm when a patient activates an alert. When the unit expands later this year, it will accommodate up to three patients for monitoring each month.
During the patient’s stay, family and friends drop by to chat, share a meal, play cards, or watch a video. For an adult, a relative or friend may stay overnight to sound an alert if the patient has a seizure. For a child, an adult must stay for the entire monitoring period.
Aleisha’s test results showed that her epilepsy could be treated with medication. Her blackouts began decreasing shortly after starting the prescription Dr. Bonno ordered. Adjusting the dosage to find the correct level of drug for each patient, while keeping side effects to a minimum, can take several weeks. Since her last dosage adjustment in January, Aleisha hasn’t had a seizure. That’s reduced her anxiety and calmed Roscoe, whom she says would alert her to an impending seizure by his meowing and pacing. Those blackout-free months marked the first in nearly 50 years, she says, that a spell did not occur every few days.
“It is terrifying to live like that and know that today is a good day, but tomorrow could be very bad,” Aleisha says. “I’ve taken hard falls, broken bones, burned my hand twice in boiling water and did not realized I was injured until I woke up from a blackout.”
“I’ve got more hope now,” she says, “and I’ve told Dr. Bonno that it took me years to find her, and now I am always going to be her patient.”