In the U.S., 3.4 million people live with epilepsy and 470,000 of them are children. While epilepsy is common, there are many misconceptions about the condition. Understanding the realities of epilepsy and those who experience seizures helps to reduce stigma around it.
Elisa Geraldino Castillo, M.D., Pediatric Neurologist at Children's Health℠ and Epilepsy and Neurophysiology Fellow at UT Southwestern, shares key facts and common myths about epilepsy.
What is epilepsy?
Epilepsy is a neurological (brain) disorder where a person has recurring unprovoked seizures. Seizures are sudden bursts of abnormal electrical activity in the brain. Seizures may be:
- Provoked, meaning there is a clear cause like problems with electrolytes, low glucose or an infection.
- Unprovoked, meaning there is no clear reason for the seizure.
Fact: Seizures triggered by flashing lights are rare. Called photosensitive epilepsy, only 3 to 5 percent of people have this type of epilepsy.
To be diagnosed with epilepsy, a person typically:
- Has two unprovoked seizures occurring at least 24 hours apart.
- Has one unprovoked seizure and a high likelihood of having another based on a medical test like an abnormal MRI or EEG.
"Epilepsy is the fourth most common neurological condition worldwide," Dr. Geraldino said. "It most often starts within the first year of life or in older adults after developing things like strokes or brain tumors that then can lead to epilepsy."
Fact: Epilepsy is common, as 1 in 26 people will develop epilepsy in their lifetime.
What causes epilepsy?
Epilepsy can happen for many reasons, including:
- Genetic epilepsy syndromes such as Dravet syndrome and Lennox-Gastaut syndrome. These may be passed down from parent to child or be a result of genetic changes that happened while a child is developing in the womb.
- Birth injuries such as hypoxic brain injuries where a baby's brain doesn't get enough oxygen during birth.
- Traumatic brain injury such as a car accident resulting in a head injury.
- Severe cases of a brain infection called meningitis which can lead to scarring in the brain and make a person more likely to develop epilepsy.
Fact: Epilepsy is not contagious. In some cases, people can have seizures after having infections leading to meningitis or encephalitis, which could be contagious. But epilepsy itself is not.
What does a seizure look like?
Many people think of tonic-clonic seizures when they think of seizures. In this type, a person typically loses consciousness and experiences a stiffening of muscles (tonic phase), followed by jerking movements (clonic phase).
"Tonic-clonic seizures are what we see in the movies, so many people associate seizures with those types of movements," Dr. Geraldino says. "But there are actually many different types of seizures."
Types of seizures include motor seizures, where a person experiences certain movements; and non-motor seizures, where a person may experience sensory changes, stare blankly or be unresponsive.
Fact: There are many types of seizures and they don't all look the same. Some involve losing consciousness, involuntary jerking movements and muscle stiffening, and others may just make you go still or stare unresponsive.
People having motor seizures may experience:
- Quick movements in their face where their lips or eyes move quickly.
- A loss of muscle tone that causes them to collapse.
- Jerks or twitches in specific muscles or in one side of their body.
Someone having a non-motor seizure may:
- Stare blankly or become absent all of a sudden.
- Drool, vomit or have a change in heart rate
- Have abnormal sensation in one part of the body like their hand or foot
Seizures usually last somewhere between a few seconds and 2 minutes. If a seizure lasts longer than 5 minutes, call 911. Learn seizure first aid and what to do if a child has a convulsive seizure.
Fact: Do not restrain a person or put anything in their mouth while they are having a seizure. It's not possible to swallow your tongue and putting something in a person's mouth can cause choking or other problems. Instead, get them on the floor, on their side and away from stairs, furniture or anything that could cause harm while having a seizure.
What are key signs or symptoms of epilepsy that people might overlook or misinterpret?
Not all seizures are obvious. Sometimes it can be difficult to know if a child is having one. Dr. Geraldino recommends making note of any abnormal movements that happen repeatedly in a stereotyped fashion and bringing this up to your doctor.
Some children can have nocturnal seizures. It is very important to get medical attention if your child is having abnormal movements or events that wake them up from sleep.
Changes in your child's development is another important sign to look for. If a child was walking, talking, eating, and meeting all of their milestones but then suddenly isn't, that could be a sign of an underlying neurologic condition or epilepsy.
"Epilepsy can present in many different ways, so I always tell parents to look out for any type of pattern, movement, or event of decreased awareness that's happening again and again in the same way. If you notice this in your child, they should be evaluated by a doctor," Dr. Geraldino says.
Fact: Epilepsy is not a mental illness. And although epilepsy can coexist with other conditions like intellectual disability, many people living with epilepsy do not have cognitive limitations and can make significant contributions to society.
Can you die from a seizure?
It is possible, although it's very rare to die from a seizure. Only about one in every 1,000 people with epilepsy dies from sudden unexpected death in epilepsy (SUDEP). Scientists still don't know why this happens, but pauses in breathing during seizures, dangerous heart rhythm changes or both may play a role.
"SUDEP is very rare, but having seizures at night, having big tonic-clonic seizures and uncontrolled seizures can increase the risk," Dr. Geraldino says. "So patients who have these three things are the ones we manage with more aggressive treatments including medications, devices, diets and epilepsy surgery in some cases, and try our best to get those seizures under control."
Is there a cure for epilepsy?
There is no cure for epilepsy. But about 70% of people with epilepsy are able to live seizure-free with the right treatment plan.
"Finding the right treatment may look a little different for each child," Dr. Geraldino says.
The duration of epilepsy is dependent on the cause. Some forms of genetic epilepsy are more severe and achieving seizure freedom is not possible. If a child has epilepsy after an infection like meningitis, they may have seizures soon after the infection but fewer seizures over time. Sometimes, children simply stop having seizures as they get older in the more benign epilepsy types.
Epilepsy is considered resolved if there is a period of at least 10 years without seizures, without medications for at least 5 years.
Are there limitations for someone who has epilepsy?
The limitations for someone with epilepsy depends on the type of epilepsy and how severe it is. Many people with epilepsy lead very typical lives.
If you have epilepsy, certain high-risk jobs may be more difficult or require certain precautions, such as being a firefighter, police officer or bus driver.
In the U.S., people with epilepsy can typically drive if they've been seizure-free for a certain period of time. That time is different depending on which state you live in. In Texas, you need to be seizure-free for at least three months to have a driver's license, and be seizure-free for five years while off anti-seizure medication before getting a commercial driver's license.
Fact: Many people with epilepsy drive, have jobs and lead typical lives.
Learn more
Designated as a Level 4 Epilepsy Center by the National Association of Epilepsy Centers, Children's Medical Center Dallas provides the highest level of treatment for the most complex cases of pediatric epilepsy, with additional advanced epilepsy treatment options available at our Level 3 Epilepsy Center in Plano. Learn more about our program and services.
Epilepsy 101 (for parents and caregivers)
Explore resources to help you support your child with epilepsy and tune in to the Children's Health Checkup podcast for a three-part series focused on understanding and managing epilepsy in children (available in English and Spanish).
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