Debunking Epilepsy Misconceptions

A few months ago, we asked on our social media channels, “what’s the most common misconception about epilepsy you’d like to debunk?”  

As a result, we received over 400 comments from members of the community. Although we received a lot of comments, there were many common themes amongst people’s responses.

In this blog post, we’re sharing and addressing the most common misconceptions mentioned to help you educate family, friends, and even strangers about epilepsy and seizures.

Misconception #1: All Seizures Are Tonic-Clonic (Grand Mal) Seizures

No, not all seizures are tonic-clonic seizures. There are many different types of seizures. Seizures are caused by sudden abnormal electrical activity in the brain, and the symptoms can vary widely depending on where in the brain the abnormal activity occurs and how far it spreads.

Tonic-clonic seizures involve two phases: the tonic phase, where the person experiences muscle stiffness and loss of consciousness, and the clonic phase, marked by rhythmic jerking movements. These seizures can be dramatic and may cause the person to fall and potentially injure themselves. These types of seizures are often shown in movies, TV shows, and other media, leading many to believe this is the only type of seizure that someone with epilepsy can experience.

Another type of seizure is an absence seizure, formerly known as a petit mal seizure. In an absence seizure, a person may appear to be staring blankly for a few seconds and then suddenly resume normal activity, often without realizing the seizure occurred. Absence seizures are more common in children and can sometimes be mistaken for daydreaming.

There are also focal seizures, which occur in a specific part of the brain. Focal seizures can be further divided into two types: focal aware seizures (formerly called simple partial seizures) and focal impaired awareness seizures (formerly called complex partial seizures). In focal aware seizures, a person remains conscious but may experience unusual sensations or movements, such as tingling or repetitive movements like chewing or hand rubbing. In focal impaired awareness seizures, a person may experience confusion, stare blankly, and engage in automatic movements like lip smacking or fumbling with objects.

Other types of seizures include:

• Atonic seizures- where there's a sudden loss of muscle tone causing falls
• Myoclonic seizures- characterized by sudden, brief jerks of a muscle or group of muscles
• Tonic seizures- marked by sudden stiffening of muscles, often resulting in falls

These are just a few of the different seizure types and this is not a complete list. If you think that you or someone you love is experiencing seizures, it’s important to contact your healthcare team right away to receive proper treatment.

Misconception #2: Epilepsy Is Contagious

No, epilepsy is not contagious. Epilepsy is a neurological condition that affects the brain's electrical activity and can cause seizures. It's not caused by germs, viruses, or bacteria that can be passed from one person to another like a cold or the flu. Instead, epilepsy can be caused by genetics, brain injuries, or have an unknown cause. People with epilepsy can live normal lives and interact with others without spreading the condition. It's important to understand that epilepsy is not something you can catch from being around someone who has it.  

Misconception #3: Not Every Person with Epilepsy Needs a Seizure Action Plan

Whether a person has controlled seizures, or they are still working to find the treatment that is right for them, they should have a seizure action plan.

Calling 911 when someone has a seizure depends on the situation and individual circumstances. If it's the person's first seizure, if the seizure lasts longer than 5 minutes, if they have difficulty breathing or another medical condition, or if they injure themselves during the seizure are the times where it’s appropriate to call 911.

However, by having a seizure action plan, loved ones can decide if they should call 911. Some people have frequent seizures and use rescue medications to manage their condition. Not every seizure is an emergency. Consider creating a seizure action plan and deciding when you’re comfortable with emergency services being called. You should also collaborate with a healthcare provider on your seizure action plan to get their thoughts on the best seizure action plan for you.

Misconception #4: You Should Not Tell Anyone You Have Epilepsy

Having epilepsy is not something to be ashamed of, and it's okay to talk about your diagnosis with others. Many people with epilepsy lead normal lives with the help of medications and other treatments. It's important to share your diagnosis with trusted friends, family, teachers, or coworkers so they understand how to support you if you have a seizure. Disclosing your diagnosis can also help educate others about epilepsy and reduce stigma. Being open about your diagnosis can lead to better understanding and support from those around you.

In some cases, not everyone is comfortable disclosing their diagnosis, and that is okay too. Disclosure is a sensitive topic, and we understand that feeling protected can be more important than telling certain people about your epilepsy.

The Epilepsy Foundation's Jeanne A. Carpenter Epilepsy Legal Defense Fund fights epilepsy discrimination across all aspects of life. Our goal is to end epilepsy-related discrimination and help you know your legal rights.

Misconception #5: You Can Swallow Your Tongue While Having a Seizure

It's a common misconception that you can swallow your tongue during a seizure, but this isn't actually possible. When someone has a seizure, their muscles can tighten, and their mouth might move in ways that make it look like they’re swallowing their tongue. However, the tongue is a strong muscle attached to the floor of the mouth, and it cannot be swallowed or blocked the way some people might think.

During a seizure, it's important to stay calm and focus on keeping the person safe by gently turning them onto their side to help keep their airway clear. Placing something soft under their head and removing any nearby objects can also help prevent injury. After the seizure, it's a good idea to stay with the person and offer support until they fully recover.

We recommend everyone in the community take a seizure first aid class to learn more about seizure safety.

Still have questions about epilepsy and seizures? The Epilepsy Foundation is here to help. You can contact our 24/7 Helpline for more information about the programs and resources we provide to the community. Additionally, we always recommend reaching out to your healthcare team if you have questions about epilepsy.