Epilepsy’s Terrifying Uncertainty

Story and photo by Kaylee Steer 

One of the less frequently talked about common medical diagnoses is epilepsy. Epilepsy is a neurological disorder that causes unprovoked, recurring seizures. One in 26 people in the United States will develop epilepsy at some point in life, according to the Epilepsy Foundation. 

Epilepsy can make it difficult for somebody to work, have relationships, drive, and much more. There are many triggers that occur before somebody with epilepsy has a seizure, but they can all be different depending on the person. The unpredictability is part of what makes epilepsy so scary and difficult to diagnose. 

“Your brain makes electricity, and that is what tells your body what to do.  A seizure happens when the brain’s electricity misfires, and then that misfiring can spread and cause abnormal electricity in other areas of the brain as well,” explained Dr. Cherie Herren, an Oklahoma City child neurologist. 

Seizures can be frightening if you don't know anything about them. My brother, Corbin, 21, has had epilepsy since he was 14. At first, we didn't even know what epilepsy was. We didn't know what was going on, so we called his seizures “episodes.” It was a scary experience for everybody.  We went to doctor after doctor, and they all gave us hoax information, which made us start to lose hope. Epilepsy is scary, serious and lacking in public awareness. We learned the hard way. 

“There are over 20 different kinds of seizures,” said Roxanne Cogil, executive director of Epilepsy Foundation Oklahoma. “It kind of depends on the types of seizures the person has when they tend to occur, (and) if they are controlled or uncontrolled with treatment.”

Medications are typically the first line of treatment, but those who have serious side effects or for whom the medication doesn’t work have other options.

“There are three categories of treatments outside of medications: epilepsy surgery, implanted stimulator devices or dietary therapy.  If someone is not responding to medications, they should be evaluated for one of these alternative treatments,” Herren said. 

Because epilepsy isn't something you can see when you look at someone who has it, it's easy to fall into the trap of thinking it does not dramatically impact someone's life. Nothing could be further from the truth. Those with epilepsy often have a very hard time in their daily lives, from declining mental health to not even being able to do things like keep a job.

“There is a lot of myths surrounding the condition,” Cogil said.

For one, seizures aren't necessarily what people think they are or look like how people expect them to look. Some seizures are hard to notice. If you see somebody who has epilepsy but you have never seen them have a seizure, look for odd behavior rather than the classic shaking people think of when they think of seizures (although some epileptics do have these types of seizures). Seizures can be subtle. Some involve loss of control or loss of awareness. Some seizures can even be people walking just like a sleepwalker would, but they have no control in that moment. Others can seem as though the person is just “zoning out,” when, in fact, they're having a seizure.

Herren noted some other misconceptions.

“Some people think epilepsy could be contagious, which it is not.  There is also a misconception that someone could be dangerous to others during a seizure, and that is not the case.  There is also an idea that someone with epilepsy can’t live a normal life, which is often not the case,” she said. 

In fact, with scientists getting ever closer to finding the genetic causes of epilepsy, Herren said the future likely will see improved treatments. 

“We are discovering more genes associated with epilepsy, and hopefully in the future that will allow us to develop new treatments that are more targeted to the underlying cause,” she said.

Back to Corbin. 

Eventually, we ended up at the Mayo Clinic in Minnesota. At first, they misdiagnosed him, but my mother fought for them to do more tests. Relief washed over us when we finally found out what was happening to him. He is now 21 years old and has been seizure-free for 2.5 years as of April. 

He takes multiple medications to keep seizures under control, but one of the biggest things that helped us through this was our faith in God. Every time he had a seizure, we would pray over him. His seizures were far from what a typical seizure would look like, which is one of the reasons we didn't know what was going on. 

When he had his first seizure, it was strange. He came out of his room screaming about how his arm hurt super badly. After that, his seizures changed. He would stiffen and just yell from all the pain he was experiencing. It was hard on everybody when we were going through that journey to find out what was going on with him. If it were up to me, I would have switched our positions in a heartbeat just so he didn't feel the pain that he felt. It was truly heartbreaking to watch him go through that. Epilepsy doesn't just affect the person. It affects their loved ones as well. It's a family affair, both in terms of caring for the person with epilepsy and watching them battle their own bodies. 

If you know somebody who has to watch somebody go through epileptic episodes, don't just worry about the person with epilepsy; also worry about the people who have to watch them go through that. 

That’s because epilepsy’s effects go beyond seizures, and the entire family is a part of the experience. 

“People with epilepsy have a significantly increased risk of mental health issues, including anxiety and depression.  Some of this is a reaction to having a difficult disease or related to medications.  However, we also know the electrical and chemical changes in the brain that happen with seizures also alter the chemicals in the brain that control mood,” Herren said. 

Herren said she would like to see greater attention to epilepsy and increased research funding. In the meantime, she encourages parents of her patients to allow them to live as normally as possible.

“We have safety measures in place (no bathing or swimming alone, avoid heights, etc.), but for the most part, I want them to do all the things that children without epilepsy can do,” she said.