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Despite its rarity, what happened to actor Cameron Boyce weighs on the minds of people with epilepsy, a brain disorder that causes seizures. The 20-year-old Disney star died recently after having a seizure in his sleep.
It’s called Sudden Unexpected Death in Epilepsy, or SUDEP, and it affects about 1 in 1,000 people with epilepsy in a given year. Unpredictability is one of the hallmarks of epilepsy, which can trigger seizures, some of them disabling, without warning.
“That’s probably the worst part of epilepsy, the feeling you don’t have any control,” says Nancy Theresa Rodgers-Neame, MD, an AdventHealth epileptologist, or brain expert who specializes in the treatment of epilepsy. She is medical director of our Tampa-based comprehensive epilepsy center.
Her goal is to help people with epilepsy reduce their level of seizures, manage their condition and regain much of their control over daily life.
Lowering a person’s risk of seizures through medication and lifestyle changes can also help to prevent sudden death from epilepsy.
What Is Epilepsy?
About one in 26 Americans has epilepsy or another seizure disorder, Dr. Rodgers-Neame says. They’re mostly composed of two groups:
- Older adults, whose brains are more likely to have suffered damage or a decline in function.
- Children, who may have a brain injury but whose epilepsy might also have a genetic or other cause. Children with epilepsy may be otherwise healthy.
A seizure is an interruption in how our brain cells communicate with each other.
“During a seizure, the brain develops rhythmic activity that’s organized but nonproductive,” Dr. Rodgers-Neame said. This means the brain doesn’t move our muscles in a normal way or tell our lungs to pump air. And, because our brain regulates our breathing — we do it without thinking, but it’s still controlled by the brain — these interruptions can be serious.
A child who has a seizure may lose consciousness or control of their body. But not all seizures are obvious; some look like an involuntary muscle movement (like an outstretched foot) while others may cause a child to stop speaking suddenly or look as if they’re daydreaming.
How SUDEP Happens
Doctors don’t know exactly why some seizures are fatal; when a person with epilepsy dies without an apparent cause, they are said to have died from SUDEP. Young people and males are at the highest risk of unexplained death from a seizure.
About seven in 10 cases occur during sleep, and someone whose seizures haven’t been controlled by medication or other treatment are at higher risk.
It’s believed that George Washington’s stepdaughter, Patsy Curtis, died from SUDEP in 1773. At the time, he wrote that the “sudden and unexpected blow” had almost reduced his wife, Martha Washington, to “the lowest ebb of misery.”
We can’t eliminate a person’s risk for SUDEP, but we can lower it by reducing their risk for seizures in general.
Often, that means treating epilepsy using every tool available. Sometimes, people with epilepsy are only given medication and are told that taking a pill is all they can do to prevent seizures. But that’s not true, Dr. Rodgers-Neame says.
Treating Epilepsy in Body and Mind
Even if a person has only a few seizures a year, epilepsy can affect their day-to-day life. Many people with the condition can’t drive for fear of having a seizure and face discrimination from employers, especially for jobs that require contact with customers, Dr. Rodgers-Neame said.
Part of treating epilepsy is about helping to calm the anxiety that seizures and SUDEP can create, she says.
For too long, some doctors have kept the truth about SUDEP from their patients, likely out of the belief that the knowledge would give them nothing but worry. Instead, Dr. Rodgers-Neame believes in validating a person’s experience with epilepsy, worries and all.
“It can be a liberating thing for a doctor to understand that your seizures are a burden, and that your worries about what might happen during a seizure are also burdens,” she said.
Patients with epilepsy can also be monitored while they have a seizure in order to see if their heart or lungs are stopping. If so, extra technology like a pacemaker can help them prevent SUDEP.
Surgery to remove the part of the brain where seizures originate may also be an option. Dr. Rodgers-Neame explained that a small part of the brain can be taken out without noticeable changes.
Unfortunately, fewer than one in 10 candidates for epilepsy surgery or other procedures get treated, she said. Often, they are simply not told about their options.
“Many people with epilepsy are seeing a doctor who’s giving them medication but isn’t really addressing all the factors behind their epilepsy,” Dr. Rodgers-Neame said. That’s why an epilepsy center, with a team of experts who study nothing else, can offer the best care.
“Patients sometimes tell me that they’ve learned more after 30 minutes talking to us than they’d learned in years from their previous doctor,” she said.
In addition to prescribing the most effective medication available, our treatments include:
- Cognitive treatment (including mental health counseling)
- Dietary guidance to help patients choose foods that are high in fat and low in carbohydrates
- Vagus nerve stimulation
- Brain surgery
We also seek to build a trusting relationship with patients. Helping you prevent seizures is a big part of our goal, but it’s not the only part. We want to support you in living a happy, productive life — in body, mind and spirit.
That’s why we have epileptologists like Dr. Rodgers-Neame working alongside a full range of experts, including neurologists, neurosurgeons and nurse specialists. Our seizure and epilepsy program is also accredited by the National Association of Epilepsy Centers.