What You Really Need To Know About Epilepsy
When you think of a seizure, you probably think of the classic Hollywood version—a person shaking violently, falling to the ground and passing out. But you might be surprised to learn seizures aren’t always that obvious.
According to the CDC, millions of people around the world have epilepsy. It has no known cure, and is marked by unpredictable seizures. Many people live with the condition their entire lives. And in some, like Disney Channel star Cameron Boyce, it can be deadly. New research is emerging about ways to treat epilepsy and help people live seizure-free. In recent years, scientists have learned a lot about this ancient disorder. Eat This, Not That! Health talked to experts nationwide to reveal the things you need to understand about epilepsy. Here’s what they said.
What Exactly is Epilepsy?
“Epilepsy is a neurological condition characterized by recurrent seizures,” says Dr. Elizabeth Felton MD, Ph.D., Assistant Professor in the Department of Neurology at the University of Wisconsin-Madison. Seizures happen when a burst of electrical activity in the brain goes beyond its normal limits. This causes an uncontrolled electrical storm in the brain.
Chances Are, You Know Someone with Epilepsy
More 65 million people worldwide are affected by epilepsy, and 3.4 million in the U.S. In fact, epilepsy is one of the most common neurological diseases on Earth, according to the World Health Organization. The disease strikes adults and children alike and is one of the earliest recorded conditions—written documents dating to 4000 B.C. have been found that speak about epilepsy. In fact, there are plenty of celebrities who have epilepsy, including actor Danny Glover, professional football player Jason Snelling, and Grammy Award-winning performer Prince.
For Most People, the Cause is Unknown
Even though it’s so widespread, the cause of epilepsy is unknown for more than 50 percent of people diagnosed according to the NHS. There are some conditions linked to epilepsy, including severe head injury, brain damage, meningitis (an infection in the brain), and certain genetic syndromes.
Auras Can Smell Like Burning Rubber
Some people have a warning called an “aura” that comes before a seizure hits. The aura can feel like dread or déjà vu, and is technically a seizure in itself. “A lot of times people say they smell something like burning rubber or burning leather,” says Dr. Lance Lee, a neurologist in Glendale, California. “Some have visual symptoms like flashing lights, and some people have a migraine. All of these could be an aura. But it doesn’t happen to everyone.”
Seizures Might Not Look Like What You’d Expect
Some people have what you’d think of as a classic seizure—falling to the floor with uncontrollable convulsions. But that’s not true for everyone with epilepsy. “There are many different ways seizures can present,” says Dr. Felton. “Sometimes you can’t tell just by looking at a person they’re having a seizure.”
Most people with epilepsy have focal impaired awareness seizures. According to the Epilepsy Foundation, these focal seizures begin in one part of the brain. Focal onset seizures can cause a person to do repeated things involuntarily—like persistently smacking their lips, staring blankly, picking at their clothes, or wandering around. Jerking movements throughout the body usually happen with seizures that affect both sides of the brain at once.
Having a Seizure Doesn’t Necessarily Mean You Have Epilepsy
Seizures are a symptom of epilepsy, but you can have seizures without being diagnosed with the condition. “Epilepsy is not typically diagnosed until a person has more than one seizure within 24 hours,” says Dr. Felton. Seizures can be caused by other problems. In young children, for instance, a quick spike in body temperature sometimes trigger febrile seizures. An epilepsy diagnosis is usually made after someone has had more than two unprovoked seizures—which means not caused by infection, injury, or withdrawal from drugs or alcohol.
Flashing Lights Aren’t the Only Thing That Triggers a Seizure
You’ve probably seen the warnings for people with epilepsy to avoid watching TV shows that feature strobing lights. But photosensitivity only triggers seizures in about 3% of people with epilepsy. The most common triggers are sleep deprivation and fever. “Even if you’re taking your medicine, if you have a high temperature you might have a seizure. Sometimes we don’t have control over it,” says Dr. Lee. “You have jet lag from a flight coming in from Asia or Europe, how are you going to control your sleep cycle? You’re not going to sleep normally. So, unfortunately, you could have a breakthrough seizure.”
Other common triggers include missed medications, alcohol, use of street drugs, infection, illness, and stress. Sometimes there’s no particular trigger.
Menstrual Seizures are a Thing
Sorry, ladies. According to the Epilepsy Foundation, about half of all women with epilepsy report having more seizures around the time of their period. Called “catamenial seizures,” they tend to happen around the time women ovulate or before menstrual bleeding. Researchers believe this is because of hormonal fluctuations in the body. The brain has a lot of nerve cells that are sensitive to estrogen and progesterone, the main sex hormones in women. Studies have found that high doses of estrogen can cause seizures in animals, while progesterone can protect against them. It’s thought that an imbalance of the two hormones during the menstrual cycle could trigger these seizures.
Good News: Epilepsy Can be Treated
Anti-seizure medication is usually the first line of defense when it comes to treating epilepsy. Taken daily, medication controls seizures in 7 out of 10 people. “Medicines are so critical. You don’t need to be afraid of them,” says Patty Shafer RN, MN, senior director for health information with the Epilepsy Foundation. “These medications calm down and ideally stop the electrical discharges that cause seizures. Medicines can affect other parts of the brain, too. There are so many other conditions that go along with epilepsy for some people—higher rates of depression, cognitive problems, even weight gain. Sometimes these things may be side effects from the medication. But seizures affect how your brain works, so it’s often not the medication, but the epilepsy itself causing the side effects.”
Though medication is the most common way to treat epilepsy, other methods include neurostimulation (the delivery of low-voltage electricity to specific nerves or area of the brain), brain surgery, and dietary therapy.
The Ketogenic Diet was Originally Designed to Treat Seizures
Long before people started eating bacon to lose weight, the ketogenic diet was intended to help control epilepsy. It’s much stricter than the Atkins diet—patients are monitored by their doctors and dieticians, and foods are measured and weighed. Ketones are formed when the body uses fat for its source of energy instead of carbohydrates. “Doctors will usually recommend the ketogenic diet for kids whose seizures aren’t responding to medication,” says Shafer. “It can work if done right – but it’s not easy. If you’re trying to lose weight and you ‘cheat’ with a candy bar, it’s probably not a big deal. But for a person with epilepsy, that candy bar can throw everything off and now they’re at risk for a seizure.” According to the Epilepsy Foundation, several studies have shown the ketogenic diet helps reduce seizures in more than 50% of kids who haven’t responded to medications. Some kids even become seizure-free.
Dogs Can Be Trained to Detect Seizures
Service dogs can be specially trained to respond if a person is having a seizure. These dogs learn to alert their families when a person has a seizure, lie down next to them to prevent injury, and even use their body as a cushion to break the fall. “We’ve had good reports from people who have seizure dogs,” says Shafer. “Epilepsy can be really isolating. Often times, people can’t drive, or go to work regularly, so it’s really hard on them. These dogs are great companions, and can offer a lot of support.”
While having a service dog is certainly a comfort, the Epilepsy Foundation also cautions they don’t take the place of medical advice for nighttime monitoring, as seizures that occur while sleeping can be especially dangerous due to risk of suffocation. And to live your happiest and healthiest life, don't miss these 50 Secrets to Live to 100.