The True Challenges of Living with Epilepsy

It can happen so quickly. You step outside to get the mail, and when you come back in the door, you know something’s wrong. You call out, but there’s no response. Dropping magazines and bills and running towards the stairs, you already know what’s happened. Skipping two steps at a time, you keep hoping it won’t be too bad, that they didn’t hit their head, that they weren’t in the shower, and that it will be okay.

Pushing through the bedroom door, you find them on the floor. Their body is still trembling, eyes rolled back, skin soaked with sweat and spit. With tears on your cheeks, you sink to the floor and pull them into your arms; whispering soft, soothing words, and attempting to calm a brain that can’t hear what you’re saying. It’s been four months since their last seizure, and you had thought maybe, just maybe, the new medicine would continue to work and your loved one would finally be seizure free.

Living with epilepsy is like living on thin ice. It may look safe and it may seem strong. It may even hold long enough that you forget how thin the ice really is. But someday, when you’re least expecting it, the ice breaks and you’re left scrambling for solid ground.

Predicting the Unpredictable

As with individuals living with diabetes, there are unique challenges that epileptics face, that leave a lot of room for uncertainty. Sometimes, seizures have triggers and sometimes they may have warning signs, such as strange smells or colors, but the fact remains that seizures are unpredictable. They can — and will — happen anywhere and anytime, whether you’re walking up the escalator at the mall or driving at 65 mph down the interstate. And for those whose seizures aren’t responsive to medication, it becomes necessary to have more companionship, especially during riskier activities, such as swimming or climbing ladders.

Sudden Unexplained Death from Epilepsy

Sudden Unexplained Death from Epilepsy (SUDEP) happens during sleep and occurs in more than one in 1,000 epileptics. It’s somewhat like SIDS in that science really doesn’t understand what causes it or prevents it, but it’s believed to be somehow related to the heart and breathing. Seventy-three percent of SUDEP cases occur when the individual is sleeping on his or her stomach, and many epileptics are therefore encouraged to sleep on their backs or set alarms throughout the night to remind them to do so.

Independence with Epilepsy

Every person who has epilepsy has a different experience. Some people’s epilepsy is nearly 100 percent managed by medication and lifestyle habits, and a life with nearly complete independence is possible. After a long time without a seizure, these people may be able to obtain a driver’s license, manage a full-time job, raise a family, and live a normal, healthy, and productive life.

Yet for others, epilepsy takes a larger toll. Being unable to drive makes transportation to doctors’ offices and the grocery store an obstacle, and managing certain tasks such as maintaining safety during a seizure or after care may require hours of a caregiver’s time. Those with certain types of epilepsy can have multiple seizures a day, and because of the constant strain on the body and brain, need nearly 24-hour care.

Looking for Solutions

Advances in medical technology are constantly happening and although more and more technological advances help manage the symptoms and seizures of epilepsy, there’s still no solution for everybody. Nearly 80 percent of cases are managed to the point that some independence can be granted, but there is always the risk of a setback, no matter how long you go seizure-free. While our technology isn’t there yet, those with epilepsy and the people that help take care of them imagine a world where a monitor can warn that a seizure is approaching. For those who have warning signs, the simple push of a button on a watch could warn a caregiver of an oncoming seizure through a smart phone app. A mattress pad or watch could be used to monitor an epileptic for signs of SUDEP, and work to wake the individual and maybe save their life if problems arose.

Regardless of the challenges that those with epilepsy face, the care and monitoring of the disease continues to improve. As time goes by, we can hope that medical innovations happen that lead to even better care and more independence.