7 Myths About Epilepsy You Should Stop Believing

7 Myths About Epilepsy You Should Stop Believing

Learn what’s really happening during seizures and how they can be managed—or even prevented.

Things we don’t fully understand may seem mysterious—even frightening. If you’ve ever seen an actor pretending to have a seizure on TV, for example, you might assume that all seizures involve uncontrolled jerking movements. Not so.

Seizures, dubbed “electrical storms” in your brain, do cause sudden, uncontrollable bursts of electrical activity. But the outward symptoms they produce depend on the type of seizure and the part of the brain that’s involved.

You may have also heard that people who are having a seizure must have their tongue held down to prevent them from swallowing it. The reality? Doing so could actually be dangerous.

Meanwhile, anyone who experiences a seizure has epilepsy, right? Think again.

Dispelling some common misconceptions about seizures—and learning the facts about epilepsy—can help these conditions seem less scary and also provide some reassurance. “There are plenty of treatments out there to help you lead a normal life,” says Kathleen Wiese, DO, a neurologist at Trident Medical Center in North Charleston, South Carolina.

Myth: Seizures always cause dramatic convulsions.
When you hear the word seizure, you may think of a person writhing around on the floor, foaming at the mouth and losing consciousness. In fact, most seizures are much more subtle than that, according to the National Institutes of Health.

About sixty percent of people with epilepsy have focal seizures, which are limited to just one area of the brain. As a result, the symptoms of these seizures tend to be less dramatic.

The most common focal seizures involve the temporal lobe—the part of the brain that processes your emotions and short-term memory, Dr. Wiese explains. These seizures are often associated with auras, odd sensations or movements in the early stage of a seizure that warn of a more serious one in the near future.

People experiencing aura may develop nausea, unusual smell or taste or déjà vu (the sense that something’s familiar, even though you’ve never experienced it before). Some people also exhibit unusual, repetitive behaviors called automatisms, including blinking, twitching, walking in circles or making certain mouth movements, such as chewing or swallowing.

Occipital lobe seizures, on the other hand, are focal seizures that occur in the back of the brain and affect vision. They can trigger a range of symptoms from temporary blindness or visual hallucinations to eye pain.

Meanwhile, the largest brain region situated in the front of the brain, known as the frontal lobe, has many important functions. Seizures involving this part of the brain produce unusual symptoms that often seem to be associated with a mental or sleep disorder.    

It’s important to understand, however, that small focal seizures can spread to other parts of the brain, causing what’s known as a generalized seizure, Wiese points out. These are the seizures that present with more “classic” symptoms, such as loss of consciousness, violent shaking, disrupted breathing, tongue biting and loss of bladder control. 

Anyone who experiences a seizure that lasts longer than five minutes requires immediate medical attention, Wiese cautions.

Myth: People might swallow their tongue during a seizure.
Rest assured, it’s physically impossible to swallow your tongue. The tongue is a large muscle rooted to the throat and the base of the mouth by large ligaments, Wiese notes. It is possible, however, for your tongue to get injured if you unintentionally bite it during a seizure. This can result in swelling that can obstruct your airway. When this happens, anything else placed inside your mouth could make it even harder for you to breathe.

“This is why you should never place a spoon or a finger or any other foreign object into the mouth during a seizure,” Wiese advises. “You can fully block the airway doing this and kill someone.”

Myth: Seizures always happen unexpectedly.
It’s true that seizures are unpredictable, and you often don’t know when or where they may occur. But some people may experience a prodrome, certain feelings or changes in behavior in the hours or days leading up to a seizure, which could serve as a warning.

These sensations shouldn’t be confused with aura, which is the early phase of a focal seizure that’s associated with certain sensations such as nausea, unusual taste or smell and behaviors such as walking in circles or blinking. A person’s aura symptoms tend to be similar each time they have a seizure.

Anyone who recognizes these warning signs or is concerned that they might have a seizure should seek immediate medical attention. Rescue treatment, including anti-seizure medications, or benzodiazepines such as diazepam (Valium) or lorazepam (Ativan), may be prescribed.

If you experience frequent seizures without warning, consider adopting a service dog, Wiese suggests. These animals are specially trained to detect and alert people to subtle changes in their behavior, which may be an early sign of seizure. Some dogs bark while others may lie next to someone having a seizure to prevent injury, or even activate a pre-programmed alarm device.

Myth: Having a seizure means you have epilepsy.
All seizures warrant evaluation by a doctor but having a seizure does not necessarily mean that someone has epilepsy. By definition, epilepsy means having two or more unprovoked seizures. There are many possible health issues that can lead to epilepsy—including brain damage, certain genetic conditions, stroke, infection that affects the brain and a brain tumor—but the exact cause of about half of all epilepsy cases worldwide is unclear.

People who use cocaine are also at higher risk for seizures, even if they’ve never had one before. Alcoholics can also have seizures if they stop drinking cold turkey, Wiese points out. Known as alcohol withdrawal seizures, these events occur within six to 48 hours of your last drink.

Although very rare, certain medications can also trigger seizures, including certain painkillers, antidepressants and antibiotics. Anyone prescribed medication should discuss their individual risk for side effects, including seizures, with their healthcare provider (HCP).

Myth: Epilepsy is rare.
It’s actually one of the most common conditions affecting the brain. In the United States alone, 1.2 percent of people have epilepsy, according to the Centers for Disease Control and Prevention (CDC). This means that 3.4 million Americans—including 470,000 children—live with epilepsy.    

Myth: Epilepsy is a disabling disease.
It’s true there are some jobs, like flying an airplane, or some sports, like scuba diving, that are off-limits for those with epilepsy. Overall, however, most people with epilepsy live full, successful lives.

“People whose seizures are well controlled can function in most any profession, and have normal family, work and social lives,” Wiese says. There are a number of medications currently available to treat epilepsy, many of which have very tolerable side effect profiles, she adds.

If your seizures are completely controlled by your antiepileptic medicines, you usually don’t need a safety plan, according to the Epilepsy Foundation. But if you’re still at risk for seizures, your employer is legally required to make modifications. Certain employees, for example, may be given approval to use a car service instead of driving a car while traveling for work. Other accommodations in the workplace for those who experience seizures may include carpeting to cushion seizure-related falls, an office located a safe distance from stairs and avoiding shift work or overnight hours, which can lead to sleep loss—a possible seizure trigger.

When it comes to physical activity, you can play most sports safely. Keep in mind, however, that while engaging in certain activities such as swimming, it’s a good idea to go with a buddy.

Myth: Lifestyle changes won’t help stop seizures.
There’s actually plenty you can do in your daily life to help. For some people who don’t respond to medication, the trendy keto diet, which is a high-fat, low-carb style of eating, has been shown to reduce seizures, particularly in children, says Wiese.

It’s important to understand, however, that this diet is very restrictive. So, you’ll need to make sure your neurologist and other members of your healthcare team are on board with it. You should also be carefully monitored by a dietitian while following this diet. In some cases, adults do better on a restricted Atkins-like diet, which is easier to follow.

Since bright, flashing lights can also be a seizure trigger, you can take some preventive steps. Use polarized or tinted glasses outdoors, rely on natural lighting when indoors as much as possible and use a screen filter on your computer monitor.

Stress is a commonly reported seizure trigger. Try to ease stress and anxiety by sticking to a healthy routine, such as getting regular exercise, practicing yoga, tai chi or Pilates or trying some relaxation and controlled breathing techniques. Speak to a healthcare professional if you need help developing effective strategies to cope with stress.

Sleep deprivation and dehydration can also trigger seizures. It’s important to take steps to make sure you drink enough water and get enough rest. Talk to your HCP if you’re having trouble nodding off. The Epilepsy Foundation also recommends drinking alcohol only in moderation or avoiding it entirely.

Medically reviewed in October 2019.

National Institute of Neurological Disorders and Stroke. “The Epilepsies and Seizures: Hope Through Research.”
University of Wisconsin Hospitals and Clinics Authority. “Occipital Lobe Epilepsy.”
Epilepsy Foundation. “Facts about Seizures and Epilepsy.”
Epilepsy Foundation. “What Happens During a Seizure?”
Epilepsy Foundation. “Using Rescue Treatments.”
Epilepsy Foundation. “Warning Signs of Seizures.”
Epilepsy Foundation. “Seizure Dogs.”
Epilepsy Foundation. “Drug Abuse.”
Harvard Medical School. “Alcohol Withdrawal.”
Centers for Disease Control and Prevention. “Epilepsy Fast Facts.”
Epilepsy Foundation. “Safety with Exercise and Sports.”
Epilepsy Foundation. “Safety at Work.”
Epilepsy Foundation. “Ketogenic Diet.”
Epilepsy Foundation. “Bright, Flashing, or Flourescent Lights.”
Epilepsy Foundation. “Lack of Sleep and Epilepsy.”
Epilepsy Foundation. “Exercise and Epilepsy: What Should I do?”
Epilepsy Foundation. “Alcohol.”
Epilepsy Foundation. “Tonic-clonic Seizures.”
Epilepsy Foundation. “Safety Sensitive Jobs”
U.S. Equal Employment Opportunity Commission. Questions & Answers about Epilepsy in the Workplace and the Americans with Disabilities Act (ADA).

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