Epilepsy 101: Living With Seizures
Sara Eve Fermin, a 33-year-old poet from Union City, New Jersey, remembers the first time she had a seizure. She was shopping at Gap when she suddenly felt her legs buckle. She tried to cry out, but her vocal cords were frozen. Her eyes flooded with color, and then everything went black. When she awoke, she was on the floor with temporary amnesia and no understanding of what had just occurred.
That was 10 years ago. Since then, Fermin has tried 15 medications, visited four doctors and undergone two surgeries to treat her condition -- intractable epilepsy, a disorder in which an individual's seizures can't be completely controlled with medication. Today, Fermin isn't seizure-free, but she's able to manage her symptoms with anticonvulsants, lifestyle modifications and a strong support system.
Doctors estimate that about 1 to 3 percent of the population has some form of epilepsy, a complicated spectrum of disorders that cause seizures ranging in type, origin and severity. Epilepsy is the fourth most common neurological disorder in the country, and experts say it's more prevalent than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined. But while about 70 percent of patients can successfully manage their epilepsy with medication, others, like Fermin, face uncontrollable seizures and are forced to seek other options. However, both physicians and patients agree: Epilepsy is a treatable disease -- and shouldn't deter most people from living a normal life.
Epilepsy 101
"Epilepsy is characterized by recurrent, unprovoked seizures caused by abnormal electrical activity in the brain," says Mohamad Koubeissi, director of the Epilepsy Center at the George Washington University School of Medicine and Health Sciences. He adds that epilepsy causes vary from person to person. Epilepsy frequently stems from a disease, a genetic predisposition to the disorder or a brain injury caused by a stroke, tumor, hemorrhage, infection or other injury. Yet some patients are like Fermin, with no family history of epilepsy or known bodily trauma. In these cases, physicians say the disorder's origin can be a mystery.
Seizures typically last from a few seconds to a few minutes and consist of convulsions or shaking. However, they can also manifest in other ways -- say, a person smells a strange scent, sees colors or visual images, or engages in strange behaviors such as chewing, lip smacking and fidgeting. Other times, a patient will simply become unresponsive and stare into space. There's no one-size-fits-all seizure; in fact, some patients with epilepsy experience more than one type of seizure.
Epilepsy is equally represented among both males and females and is most often diagnosed in young children and older adults. Most children are diagnosed when they're 3- to 6-years-old; younger patients usually have hereditary epilepsy and often outgrow it with age. In older adults, epilepsy risk increases two to threefold for patients over 65 due to strokes, tumors and other diseases. However, adolescents and young adults like Fermin can also present with symptoms, says Imad Najm, director of the Cleveland Clinic Epilepsy Center -- even if they've never shown signs of a prior seizure.
For example, someone might be born with a tumor. It never becomes malignant but nevertheless causes a brain lesion that eventually triggers a seizure. A brain injury might be present from playing sports or engaging in active pastimes. Encephalitis, a brain infection that often occurs in children, can lead to epilepsy in subsequent years. And sometimes, Najm says, patients may have had epileptic seizures as children that weren't noticeable to others. They didn't convulse, but did have a brief loss of consciousness, a bout of nausea or a 5- to 10-second blank spell. Also, he says, the spots or stars some patients see during a seizure are often chalked up to migraines, not epilepsy. "Shaking is only a small percentage of the way seizures present in the majority of patients," Najm says. The stress of emerging adulthood can instigate all these enabling factors, leading to the expression of seizures in a person's teens or 20s.
While there are many different subclassifications of epilepsy and seizures, physicians say the disorder can be broadly divided into two types: generalized epilepsy and focal epilepsy. Generalized epilepsy is when electrical discharge occurs in both sides of the brain. It's common in children, typically genetic and not associated with any brain legions. In generalized epilepsy, seizures tend to occur suddenly and without warning.
Focal epilepsy, on the other hand, refers to electrical activity that starts from a limited area of the brain. Unlike generalized epilepsy, it's most common in adults.
Patients often experience physical warning signs -- seeing or smelling things, for instance -- before a seizure. Twenty to 40 percent of patients with focal epilepsy don't have any visible problems causing the seizure, Najm says. But a sizable amount do have a tumor, a scar from trauma or some other kind of brain malformation. Knowing which type of epilepsy a patient has can help physicians evaluate and treat the disorder.
Many people envision full-body convulsions when picturing an epileptic seizure. But seizures can appear quite different in either type of epilepsy. They can also differ from patient to patient, depending on their source of origin in the brain. Generalized epilepsy can manifest as jerking on both sides of the body, or as a staring spell with decreased responsiveness. Meanwhile, with focal epilepsy, symptoms vary, ranging from visual illusions or hallucinations to voices and déjà vu.
Fermin, for one, struggles with focal epilepsy. Her seizures start in her occipital lobe, the part of the brain that controls vision. Occasionally, they're "tonic-clonic" -- the medical term for the stiffening and jerking seizures many people associate with epilepsy. Before a tonic-clonic seizure, Fermin has an "aura," or symptoms before the seizure begins. She sees a blinking, multicolor pattern, and the right side of her body coils into tight cramps. Her vision goes white; her ears start to ring. She can sometimes vaguely overhear her surroundings, but she eventually loses consciousness.
Receiving an Epilepsy Diagnosis
Epilepsy is diagnosed when a patient has two or more seizures without a specific cause. However, not all people who experience a seizure have epilepsy, Najm says. Countless factors -- low blood sugar, a panic attack, diabetes or a heart condition -- can cause a non-epileptic seizure. Often, it takes multiple seizures for a physician to make a diagnosis. During this time, a patient must visit a doctor -- preferably an epileptologist, a neurologist who specializes in the treatment of epilepsy. There, the patient can describe his or her symptoms, family history and the circumstances surrounding their seizures. The epileptologist might order blood tests, a brain scan or an electroencephalogram, a test that records the brain's electrical activity.
In Fermin's case, it took a year to be diagnosed with epilepsy. After her first seizure, she visited the hospital and was given Dilantin, a common anti-seizure medication. However, successive rounds with various anticonvulsants -- which physicians say are effective in about two-thirds of patients -- didn't work.
Fermin was soon back in the emergency room. Not long after, she began having two to three seizures a week. All her tests came back normal. Several stints in the hospital's epilepsy monitoring unit -- a specialized inpatient section designed to constantly monitor patients for seizures -- were required. So was cortical stimulation mapping, a procedure in which doctors removed part of Fermin's skull and planted strips of electrodes under the brain's surface to pinpoint where her seizures occurred.
Fermin's doctors eventually discovered that her seizures originated in her brain's occipital lobe. This, combined with the fact that she had tried and failed at least two medications, made her an optimal candidate for two common types of epilepsy surgery. First, Fermin underwent a partial lobectomy of her occipital lobe, in which the neurosurgeon removed part of her brain and replaced it with a piece of foam. The procedure caused her to lose right peripheral vision in both eyes, but it also helped minimize her seizures. She later had vagus nerve surgery, which means a doctor implants a pacemaker-like device into the body that emits pulses of electricity. The electricity travels through the vagus nerve into the brain, where it helps control seizures.
Surgery is often considered a last resort, but it's also an effective treatment for intractable epilepsy. For patients who aren't fit for surgery, however, a low-carb, high-fat diet is often a good bet. Doctors say this type of diet helps minimize seizures in patients, although they don't know why.
Complications and Risks
For the most part, people with epilepsy can live normal lives. However, they do have limits. In some states, patients must prove they've been seizure-free for a prolonged period before receiving their driver's license. Some sports, such as sky diving, scuba diving or riding a motorcycle, might be risky. There are also innate complications with the disease, says James Tao, an epileptologist and director of the Electroencephalography Laboratory at the University of Chicago Medical School.
"With epilepsy in general, the mortality rate is at least two to three times higher than general population," Tao says. Accidents can happen. A patient might, for example, have a seizure and fall from high ground. He or she might drown while swimming. And when a patient has a seizure that's longer than two to five minutes, the mortality rate can increase dramatically.
There's also a phenomenon called Sudden Unexpected Death in Epilepsy, or SUDEP, in which a person with epilepsy dies unexpectedly, often in his or her sleep. According to the Epilepsy Foundation, a nonprofit national foundation that provides resources for people with epilepsy and seizure disorders, more than 1 in 1,000 individuals die from SUDEP each year. Although the underlying science is still being researched, physicians theorize SUDEP might be caused by an irregularity in heart rhythm, impaired breathing or fluid in the lungs. Tao recently authored a study in the medical journal Neurology that found 73 percent of sudden unexpected death cases occurred while individuals were sleeping on their stomach. People with epilepsy might consider sleeping on their backs, Tao says, and using wristwatches or bed alarms to detect seizures during sleep.
Living With Epilepsy
Although her seizures never fully disappeared, Fermin hasn't had one since last October. Her surgeries, combined with a variety of anti-seizure medications, allow her to live a normal life. She can't drive, though, and she must take precautions while traveling on her own.
Like many patients with epilepsy, Fermin has depression and anxiety, and has taken medicine for both. She's also had to adopt various coping mechanisms to deal with her disorder. She's joined various epilepsy support groups. And since seizures can be triggered by stress or little sleep, Fermin -- a self-described night owl who once actively competed as a slam poet -- now limits her performance schedule. She also makes sure to eat regularly and get a minimum eight hours rest per night.
In general, says Michael Kohrman, director of the Pediatric Epilepsy Program at University of Chicago Medical Center, patients with epilepsy should adhere to what he calls "the Shangri-La theory of life -- doing things in moderation." It's also important, he says, to have a strong safety net of doctors, close friends and family. But perhaps most vital, Fermin says, is for patients to control their attitude toward the disorder and not let it control them.
"I've had seizures everywhere I could," Fermin says. "I've pretty much broken my seizure embarrassment threshold of possibility. I even had one onstage during a performance. But I got back up and finished."
