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What You Should Know About Epilepsy

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Epilepsy affects about three million people in the U.S. alone. But while people associate seizures with the disorder, a lot of myths persist about epilepsy. 

Highlights from the interview with Dr. Sadat Shamim, director of inpatient neurology at Baylor University Medical Center at Dallas:

About epilepsy:  "Epilepsy is the fourth most common neurological problem after migraine, stroke and Alzheimer’s Disease. And some statistics would say it’s the third. But it is a common condition in the neurological spectrum of conditions in that many conditions will have epilepsy symptoms or seizures as a manifestation, so even people with Alzheimer's are at a high rate of developing epilepsy. People with MS are at a high rate for developing epilepsy. People with strokes – five percent of them will go on to develop epilepsy as well.  So, it’s not an isolated disease."

Epilepsy and seizures: "Seizures themselves are the symptom. The underlying cause can be anything that irritates the brain: An old lesion from a stroke, scar tissue, a tumor, other injuries that you might see in MS. And then there are other conditions that people are born with like abnormal cells in the wrong place and things along those lines as well."

Risk factors for epilepsy: "Just about anyone can develop epilepsy. There are risk factors associated with epilepsy, but they’re typically not addressed until someone has their first seizures. In the case of epilepsy, it's someone who’s had a single seizure and then you go on to risk stratify them to see if they’re going to have more: Getting brain pictures, then functional tests, and then you put all that together to see you’re likely to have more seizures in the future."

Some myths or false assumptions about epilepsy:

  • People with epilepsy can’t work or maintain a job: “Most people with epilepsy are controlled on their seizure medications, and once controlled, they can do most jobs. But there are other components to it: How do you get to work? What jobs do you do? What do people think of you? Can you tell people at work? Can you tell your friends, your family? Those are things that, when my patients come to see me, are on the forefront of their minds. It’s very important for physicians to talk with their patients about these things.”
  • People with epilepsy can’t drive: “Texas law states that people who’ve had a seizure within the last three months can’t drive. If you have epilepsy and your seizures are well-controlled, then you can drive. Some states require a physician to report a patient who has epilepsy to the motor vehicle department. Texas is not one of them, and I think most epileptologists don’t like those laws because if I have a patient and they know I have to report them, they might not be honest with me. The most important thing is for a doctor to develop a relationship with the patient where you trust each other and you educate why you need to wait those three months.”
  • Women with epilepsy can’t have children: “That is a myth that is perpetuated within the general public and by physicians. There’s a slight risk of people taking seizure medication have babies with an abnormality, but that risk does not warrant not having a family and not making those decisions.”  

More facts about seizures and epilepsy (from the Epilepsy Foundation):

  • You can’t swallow your tongue during a seizure. It's physically impossible.
  • You should NEVER force something into the mouth of someone having a seizure. Absolutely not! Forcing something into the mouth of someone having a seizure is a good way to chip teeth, cut gums, or even break someone's jaw. The correct first aid is simple. Just gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.
  • DON'T restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own. You can protect the person from injury by following simple first-aid guidelines.
  • Epilepsy is NOT contagious. You simply can't catch epilepsy from another person.
  • Anyone can develop epilepsy.  Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.
  • Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.
  • Even with today's medication, epilepsy CANNOT be cured. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure. 

  • You CAN die from epilepsy. While death in epilepsy doesn't happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is SUDEP or Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the U.S. each year occur from these seizure emergencies.
  • What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure.  The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.
  • People with epilepsy are usually not physically limited in what they can do. During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically. 

For more information:

About Epilepsy: The Basics

Epilepsy Information Page 

Sam Baker is KERA's senior editor and local host for Morning Edition. The native of Beaumont, Texas, also edits and produces radio commentaries and Vital Signs, a series that's part of the station's Breakthroughs initiative. He also was the longtime host of KERA 13’s Emmy Award-winning public affairs program On the Record. He also won an Emmy in 2008 for KERA’s Sharing the Power: A Voter’s Voice Special, and has earned honors from the Associated Press and the Public Radio News Directors Inc.