9 Stubborn Myths About Epilepsy to Stop Believing
Epilepsy has long been seen as mysterious. Centuries ago, it was associated with the supernatural, and people who experienced seizures were even thought to be possessed by evil spirits. (Yep, yet another reason to be grateful we’re living in the modern age.) To this day, myths about the condition remain widespread, adding to the stigma that affects so many people with epilepsy. We uncovered the most prevalent—and harmful— misconceptions.
Myth: Epilepsy is always diagnosed in childhood.
A lot of folks wrongly believe that if you don’t suffer seizures as a kid, you’re in the clear, but epilepsy can actually occur at any age, says Emily L. Johnson, M.D., assistant professor of neurology at Johns Hopkins Epilepsy Center. Truth is, epilepsy is most common in both the young and the old. “In fact, people ages 60 and over have the highest rate of new-onset epilepsy,” says Dr. Johnson. Why? Older people are likelier to have a stroke or to develop brain tumors or Alzheimer’s disease, all of which can cause epilepsy.
Myth: Epilepsy is contagious.
It’s not catching, but it does have many possible causes. In babies and kids, epilepsy is more likely to be the result of genetic factors or injuries sustained just before or after birth. In adults, it’s more often brought on by head trauma, a stroke, or a brain tumor. Occasionally, a serious infection that affects the brain or spinal fluid, like meningitis, can trigger seizures. But epilepsy or seizures can’t be “caught” from another person—no way, no how!
Myth: Epilepsy is super rare.
Epilepsy is a lot more prevalent than people realize, according to neurologist George Nune, M.D., medical director of the epilepsy-monitoring unit at University of Southern California’s Keck Hospital is Los Angeles. About 1% of Americans are dealing with epilepsy, according to the Centers for Disease Control and Prevention—that’s about 3 million adults and nearly half a million kids. So chances are you know or have known someone who has epilepsy—they’re just keeping it on the DL. “They may just not talk about it,” says Dr. Nune, “either because their symptoms are controlled or because of the stigma surrounding the disease.”
Myth: Epilepsy is a lifelong, debilitating disease.
Science has uncovered effective ways to reduce or even completely alleviate the symptoms of epilepsy. “With the right medications, the vast majority of cases can be well-controlled, and many patients will have no breakthrough seizures,” says Dr. Nune. And kids with epilepsy often outgrow their seizures by high school. Less than a third of sufferers have a more severe form of epilepsy that requires other treatment options, such as dietary therapy or even brain surgery.
Myth: Epilepsy causes psychological problems.
Epilepsy is definitely not a mental illness, although people with uncontrolled seizures can become socially isolated, leading to depression, notes Dr. Nune. Epilepsy also has zero impact on your intellect. Many with epilepsy are extremely high-functioning, and there are plenty of important historical figures who were known to have epilepsy, including writer Lewis Carroll, President Theodore Roosevelt, and scientist Alfred Nobel. Not bad company, right?
Myth: Seizures are dangerous and life-threatening.
When you hear the words “epileptic seizure” you probably conjure violent convulsions and loss of consciousness, what’s known as a tonic-clonic seizure. But not all seizures look like that. A seizure might trigger shaking in just one part of the body, or it might simply cause a strange feeling or changes in behavior. “A seizure in and of itself is not likely to be life-threatening, and the vast majority will stop on their own within a couple of minutes,” says Dr. Nune. The bigger danger, he notes, is if the person is doing something like swimming or driving when a seizure occurs.
Myth: You never know when a seizure may strike.
While it’s true that seizures can be unpredictable, many sufferers notice warning signs that a seizure is about to occur. These alarm bells can include tingling sensations, muscle spasms, confusion, headaches, or a funny taste in the mouth. And thank goodness for them. “When people experience a clear buildup to a seizure, they can stop what they’re doing and get themselves somewhere safe,” says Dr. Nune.
Myth: If someone is having a seizure, you should put something in their mouth so they don’t swallow their tongue.
Big phew: Swallowing your tongue is physically impossible. Meanwhile, forcing anything into a person’s mouth could chip a tooth, cut their gums, or even hurt their jaw. Instead, make sure the person having the seizure is in a safe place where they can’t hit their head, and turn them on their side in case they vomit. If the seizure lasts longer than a few minutes, call 911. The longer a seizure lasts, the less likely it is to stop on its own—and the harder it is for doctors to treat it with medication.
Myth: People with epilepsy can’t lead normal lives.
While it’s true that you may have your driving privileges yanked when you’re first diagnosed with epilepsy, you don’t necessarily have to rely on Uber forever. The vast majority of people can get their seizures under control with medication, notes Dr. Nune. In most states, once you’ve been seizure-free for a certain period of time (the length varies by state), you’ll just need a doctor’s report saying that you’re fit to drive. And driving’s not all you can do. Every day, people with epilepsy are rocking demanding jobs, playing sports, and raising kids. Dr. Nune reassures, “While it’s true that you may have to adjust your lifestyle, you can still have a full, active life.” There’s no stopping you!
Intro: Brain: A Journal of Neurology (2002). ”A Disease Once Sacred. A History of the Medical Understanding of Epilepsy.” academic.oup.com/brain/article/125/2/441/297016
Epilepsy Fast Facts: Centers for Disease Control and Prevention. cdc.gov/epilepsy/about/fast-facts.htm
Warning Sigsn: Epilepsy Foundation. (2013). "Warning Signs of Seizures." epilepsy.com/learn/managing-your-epilepsy/understanding-seizures-and-emergencies/warning-signs-seizures
Epilepsy in Children: Diagnosis & Treatment: American Academy of Pediatrics. (2016). "Epilepsy in Children: Diagnosis & Treatment." healthychildren.org/English/health-issues/conditions/head-neck-nervous-system/Pages/Epilepsy-in-Children-Diagnosis-Treatment.aspx
People with epilepsy can’t lead normal lives: Neurology Research International. (2018). “The Perceived Social Stigma of People with Epilepsy with regard to the Question of Employability.” doi.org/10.1155/2018/4140508