Last Sunday, March 12, 2023, was daylight savings time, with those affected losing one hour of sleep. For the average person, it is usually nothing more than a mild annoyance. Maybe you hit snooze one more time than usual or need an extra cup of coffee the next morning to start your day. When you have epilepsy, however, losing an hour of sleep can be harmful. Planning to ensure you can make up for that one hour of sleep is vital.
Most people don’t think about sleep on a regular basis, but if you or your loved one has epilepsy, it’s important to understand how sleep impacts your health and seizures. As a person with epilepsy, I understand this connection firsthand.
Learning About Sleep and Epilepsy Through My Experience
I first began having absence seizures when I was 7 years old. At that time, knowledge of the different types of seizures was practically nonexistent, so I was simply called “a chronic daydreamer.” This went on until I was 9, when I got a new teacher. Luckily for me, she had a son with absence seizures, and she recognized the signs immediately. She called my parents, and they took me to a neurologist who diagnosed me with epilepsy. Through the years I learned to manage it, but my seizures were never fully controlled. I was okay with this, because aside from not being able to drive, my life was the same as any of my friends. This went on until I turned 18, when I had my first tonic-clonic seizure at a friend’s birthday party.
When my type of seizures changed, my world did too. I knew I had to take my epilepsy seriously, and after working with my doctor, I found that a lack of sleep was a major trigger for me. I got on a new medication and got to a place where I felt my epilepsy was controlled. However, after going almost two years without a seizure, I started to slip. At that time, that had been the longest I had ever gone without having one, and my epilepsy started to seem more like a trivia fact about myself than a condition that I needed to monitor and care for.
While pursuing my bachelor’s degree from the University of Texas, I did what college students do almost every day. I pulled an all-nighter and stayed up until 6 a.m. writing my final paper for a class. After I finished the paper, I slept for about an hour, and then awoke to walk across campus and turn it in. On the way back home from class, I stopped in my dorm’s dining hall for a quick breakfast. I was sitting at a table when I felt what was later explained to me as an “aura.” Basically, it was a feeling that some people with epilepsy get right before they have a seizure. I had never experienced this feeling, but I somehow knew there were just a few seconds before the seizure.
Using all the energy I had, I moved myself over to an open booth and laid down on my side, hoping that the softer seat would make for a safer seizure environment. I was lucky because not only did the aura allow me to put myself into the safest position possible ahead of my seizure, but the employees in the dining hall knew how to help me. I walked away from that experience knowing two things for sure: getting enough sleep and educating the people around me about what they can do for me during a seizure are important.
There are more than 3.4 million people in the U.S. living with epilepsy. Knowing what to do when someone has a seizure can make a difference. Learn seizure first aid.
Tips for Successful Sleep with Epilepsy
Getting enough sleep is an important tool to help people manage their epilepsy. Below are some tips to help you practice good sleep habits and get the rest you need.
1. Speak up about your needs.
Sharing your epilepsy with people at work or school can be scary, but it is often necessary to put your health first. I have had to tell my employers in high school and college that there are certain shifts I cannot work. I also made plans with my college professors to spread out my assignments, so I wouldn’t have so much work due at one time that I would stay awake all night to finish it. Sure, it was hard to talk about, but in my experience, it was worth having the conversation because professors want you to learn and succeed in their class without compromising your health.
2. Make a bedtime routine and stick with it.
Give yourself enough time to do what you need before bed and stick with the same bedtime each night. It’s often easier said than done. I don’t always fall asleep at the same time every night, but I try to hold myself accountable to my routine, which helps me lead a happier and healthier life.
3. Have a plan to tackle challenges.
Just like with anything in life, sometimes keeping a sleep schedule can be a big challenge. Maybe it is daylight savings time, and you are losing an hour of sleep, or maybe you are traveling, and the only flight option is a red eye. Whatever the reason, there will be times when you can’t follow a typical routine. When challenges come up, have a backup plan to ensure you can still get the sleep you need.
4. Do what is best for you.
When it comes to sleep and epilepsy, you know you best. Finding the things that work for you puts you in the best position to succeed. Maybe you sleep best when you read or meditate before bed, or maybe you sleep best when you wear an eye mask. There are a lot of recommendations out there for how to get the best sleep, so you can find what works best for you and your situation.
Getting the right amount of sleep and getting quality sleep is important for our health and well-being. Talk to your doctor if you're having trouble with sleep or seizures.
Tyler Beck is part of the Epilepsy Foundation's Advocacy team where his efforts focus on advocating for increased access to quality care, training, and resources for people with epilepsy through various nationwide coalitions, including the Seizure Safe Schools initiative.