What do you really know about epilepsy?

November 02, 2017

Facts about a misunderstood yet common disease:

  • Affects one out of 100 people
  • A single or provoked seizure doesn’t mean you have epilepsy
  • Never try to restrain someone who’s convulsing

When you think about epilepsy, you may think of seizures. But Lisa Caylor, MD, epileptologist at Swedish, associates epilepsy with a stigma she knows all too well. “Although epilepsy is so common that it affects one out of 100 people, patients often don’t feel comfortable disclosing when they have the condition because it carries a lot of stigma for people, sometimes more so than other neurological conditions,” Dr. Caylor explains. 

Why is there so much fear and misunderstanding around epilepsy? “I think what the issue boils down to is that there isn’t much education about epilepsy and its treatment. People need a greater awareness of what epilepsy is and what it isn’t. Sometimes our patients take it upon themselves to educate others around them, but that’s not enough. Large organizations like the Epilepsy Foundation are doing their part to educate the public, and I think that’s necessary to combat the stereotypes,” she says.

Most of you will find it surprising that having a seizure doesn’t necessarily mean you have epilepsy. According to Dr. Caylor, “Epilepsy is a condition characterized by recurrent, unprovoked seizures.  A seizure is an isolated event caused by hypersynchronized electrical brain activity. Sometimes people have spells that do not represent epileptic seizures, and it’s important to make that distinction.”

Different types of seizures

  • Nonepileptic seizures. While epileptic seizures are caused by abnormal electrical discharges in the brain, nonepileptic seizures may be caused by other physiologic conditions, or may be stress-related. At times, these types of seizures are difficult to accurately identify because of their resemblance to epileptic seizures. 
  • Generalized seizure. “A generalized convulsive seizure involves the brain diffusely and almost always results in a loss of consciousness,” explains Dr. Caylor. 
  • Partial onset seizure. ”These types of seizures start in one part of the brain and can spread to varying degrees. Because of this, these seizures have the potential to become generalized. In the event of a partial seizure, the individual may or may not have associated impairment of awareness depending on the severity of the seizure.”
  • Complex partial seizure. “As I mentioned, if a person has an impairment of awareness during a partial seizure, it is then called a complex partial seizure. In these cases, a person may experience automatic and purposeless movements like fumbling, lip smacking or wandering behaviors,” says Dr. Caylor.

If you’ve ever witnessed a seizure, it can be quite alarming. Here’s what to do to ensure safety for both the person experiencing the episode and yourself:

  • Take a deep breath and don’t panic.
  • Don’t put anything in the person’s mouth. 
  • Don’t try to hold them down or keep them from convulsing.
  • If they are convulsing or appear as if they may fall, try to assist them into a lying position on their side to prevent airway obstruction. 
  • Remove any sharp objects nearby.
  • Place something soft under their head. 
  • If the seizure lasts longer than five minutes, call 911. 

“Often people get nervous when they witness a seizure so they do things that are counterproductive. People who are convulsing typically experience tongue trauma because their jaw locks and they bite down. It’s important to remember not to put anything in their mouth – even though you are trying to help. This could cause them to break their teeth or worse, choke. Keep in mind that during a seizure, some people have violent muscle contractions that could potentially lead to bone fractures, so trying to hold them down can increase that risk,” says Dr. Caylor.

She goes on to say, “Take a deep breath and try to stay calm.  You will be more effective at helping someone that way. Seizures usually end after a few minutes, but if it lasts longer than five minutes then you should seek medical help. Prolonged seizures could lead to more serious health implications.”

If these suggestions are news to you, you’re not alone. Most people diagnosed with epilepsy have questions about how they should handle their convulsions and how the disease will affect their lifestyle. Most commonly, they worry about how it will change them mentally. 

“Understandably, some people learn they are diagnosed with this disease and become depressed, and that’s a terrible thing to live with. Others are concerned with how epilepsy will impact their memory. We are fortunate that our facility has a multi-disciplined team that can treat symptoms of epilepsy using a variety of methods. About two-thirds of patients can be treated and will eventually be seizure-free. For the rest of the population, it’s important that they aren’t afraid to get treatment so they can manage the disease and lead normal lives,” explains Dr. Caylor.

“Epilepsy doesn’t have to be scary. The fear that comes along sometimes has more to do with what people think epilepsy is and not what it actually is.”

If you or someone you know is experiencing seizures, please contact a medical professional today.