My 7 Tips for Managing Epilepsy: ‘It’s Important to Prioritize Yourself’
Key takeaways:
Sara Staggs is an advocate for people with epilepsy, working to dispel the stigma around the condition.
Her top tips for managing epilepsy include prioritizing sleep, eating a balanced diet, and managing stress.
She also highlights the importance of seeking mental health support, building a strong support network, and educating others about seizure first aid.
A few years ago, patient advocate Sara Staggs was taking part in an epilepsy-focused symposium when another attendee said, “You don’t look like you have epilepsy.”
Sara remembers being surprised by the remark but not that surprised. Epilepsy isn’t a rare disorder — it affects more than 3 million people living in the U.S. — but it’s not often talked about.
“Let’s talk about it,” says Sara, a 44-year-old author in Portland, Oregon. “Epilepsy research is very underfunded because there’s some stigma around it. But it’s the fourth most common neurological disease in the country, and it affects 50 million people worldwide.”
So Sara is talking, sharing details of the treatments she has had to help manage her seizures. In addition to medication, she has undergone laser ablation surgery and electrode brain implants. As an advocate, she’s also giving hope and advice to others with epilepsy and their caregivers.
She’s also writing: In addition to a personal blog, on which she addresses issues like telling your children about your condition, Sara is the author of “Uncontrollable,” a novel published in 2023. Like Sara, the book’s main character has epilepsy and could die if her seizures aren’t managed. The characters are fictional, but the medicine and procedures described are Sara’s experiences.
Here are some of Sara’s recommendations for using your lifestyle to help manage your epilepsy.
1. Don’t underestimate the power of sleep
Fatigue puts extra stress on the brain, and extra stress is “something the brain doesn’t respond well to if you have epilepsy,” Sara says.
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She’s the mother of two preteen boys, so getting a solid 8 hours of rest each night can be a challenge. Still, she prioritizes it. She stops engaging with anything with a screen at least 30 minutes before she goes to bed, using that time to decompress. That could mean journaling or reading a book.
She limits herself to one cup of coffee per day and avoids caffeine after 3PM. She also takes over-the-counter melatonin, a supplement to help with sleep, “for an extra boost of calmness.”
2. Eat well, and avoid sugar
Nutrition is one way Sara manages her condition, and she tries to avoid sugary foods.
“Some people with epilepsy, like me, don’t metabolize sugar the same way [others do], and sugar puts the brain under extra stress,” Sara says.
She also avoids alcoholic drinks because of the high sugar content. She’s careful with her eating, but she’s also realistic.
“I try to make smart choices. If this is Thanksgiving, and that’s a home-baked pie, let’s have a slice knowing it’s a calculated risk,” she says. “Do I have rescue meds? Well, maybe I’ll need them in the morning.”
3. Try to manage stress levels
Sara understands how difficult it is to manage stress and says she has trouble with this one. “But find some ‘you’ time to decompress because doctors are now realizing the effect that chronic stress has on the body, especially the brain,” she says.
“The meds we take to calm our brains can have side effects like depression and anxiety,” she adds. “If you try to manage your stress, you can curb mental health issues.”
She enjoys using the Calm app to do a 1-minute body scan, which requires users to close their eyes and check in with their bodies. Sara knows others who practice yoga or meditate.
“Everyone just needs to find what they can fit in to de-stress themselves. It’s important to prioritize yourself so you can function in the world,” Sara says. “If going to meet a friend for coffee makes you happy, that’s great. If mountain biking makes you happy, do it — just wear a helmet. Some people enjoy cooking or, if they have time, going on a date night.”
4. Make your mental health a priority
This tip builds on managing stress, Sara says.
“Mental health can really suffer when you have epilepsy — from mood disorders because of [medication] side effects to general depression and anxiety,” she says. “There is a lot that goes into having a seizure disorder besides just having seizures.”
Sometimes Sara gives her brain a break by reading or watching a TV show that doesn’t demand heavy thinking.
She also recommends keeping your epileptologist up-to-date on your moods. You may need medication or therapy, she says.
5. Realize it’s OK to ask for help
Sara knows reaching out for help can be challenging.
“In our culture, it can be seen as a weakness to ask for help,” she says. “But it’s important to build a good team — family members or friends — who can do the practical stuff like make dinner or run errands when you can’t.”
She says she has four people she can call and say, “I just had a seizure. My head really hurts, and I’m alone. Can you come sit with me?”
“It’s important to have a team of people who understand that you may sometimes need extra help — someone who can make dinner or run an errand,” she says.
6. Tell people about your condition
Sara recommends telling the people you frequently spend time with about your epilepsy and teaching them seizure first aid.
“You don’t want to end up being held down on the ground with a wallet in your mouth,” she says, addressing two misconceptions about how others should respond to someone having a seizure.
Sara teaches these guidelines from the Epilepsy Foundation:
Stay: Stay with the person having a seizure.
Safe: Make sure they’re in a safe place. If they’re on the floor, for example, put something soft under their head.
Side: If someone is having a seizure and is lying on their back, roll them on their side.
“You can’t shake someone out of a seizure.” Sara says. “Just let their brain run its course.”
7. Don’t worry: The kids will be all right
When her boys were little, Sara worried that her seizures would scare them. But having a parent with epilepsy and seeing that parent have seizures won’t scar the children, she says. When her sons were preschoolers, she taught them that the best thing they could do for her if she had a seizure was to get another adult, perhaps their father or nanny. When they started kindergarten, she taught them seizure first aid.
Her sons, now ages 9 and 11, are part of her care team, she says. If she’s unable to cook dinner, they know how to make ramen or pour a bowl of cereal.
“Having epilepsy will not traumatize your children,” Sara says. “Children are more resilient than you think.”
Sara says lifestyle changes alone can’t control epilepsy. But minor adjustments in eating and behavior can make a big difference in your quality of life.
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