The Hidden Burden of Living With Epilepsy

For people with epilepsy, disease burden cannot be fully captured by counting seizures. The possibility that a seizure could occur without warning can affect how patients approach work, relationships, independence, and everyday activities, creating a persistent psychological burden even during periods when seizures are relatively infrequent.

In this NeurologyLive® Insights series, Jacqueline French, MD, professor of neurology at NYU Grossman School of Medicine and co-director of epilepsy research and epilepsy clinical trials at NYU Langone Health, offers a clinician-focused examination of the realities of epilepsy across the disease course. Drawing on her extensive experience in epilepsy care and research, French explores areas where greater clinical understanding can improve recognition, management, and long-term support for patients.

In this opening episode, French looks beyond seizure frequency to discuss some of the less visible challenges of living with epilepsy. She highlights the anxiety created by the unpredictable nature of seizures, growing awareness of mortality risk, including sudden unexpected death in epilepsy (SUDEP), and the considerable responsibility patients carry to remain adherent to antiseizure medication every day.

Edited transcript (please place below body text): Jacqueline French, MD:

The most consistently overlooked aspect of having epilepsy is the anxiety that comes with having seizures that can happen any time of the day, any time of the night, any time of the week.

Just imagine if you were carrying a cell phone, and every time the cell phone went off, you had to lie on the ground or do something that you didn't even know you were doing in public. You might wander, you might not be aware of your surroundings, and you might be in danger. All of these things are incredibly anxiety-producing because they are so random and can't be predicted.

I always say that if all seizures could happen at 3:00 in the morning on Tuesday, epilepsy wouldn't be such a bad disease, but unfortunately, you can't schedule them.

In addition, a second burden is the fact that there is a risk of mortality with epilepsy, and more people are becoming aware of it as time goes by. There is sudden unexpected death in epilepsy, which again is of higher likelihood the more tonic-clonic seizures that you have, but everybody has a risk, and now everybody knows about that risk.

The other burden that people carry is that the medication they take is only an antiseizure symptomatic medication. It doesn't actually treat or improve the underlying condition, and that means that if they fail to take it for one reason or another on any given day, their risk of a seizure shoots up on that day.

So, the burden of not missing a pill ever, for anything, is much higher than people realize. I've had patients who missed a pill after being perfect with their medication for years and years and had a seizure on the day that they missed it. It's hard to imagine that anybody can be that adherent.