My 10 Tips for Managing Epilepsy Triggers and Staying Seizure Free
Key takeaways:
Jessica Keenan Smith has lived with epilepsy since she was 12 years old.
She takes medications and has learned to recognize and manage her seizure triggers.
She has been seizure free for 22 years. These are her 10 best tips for staying seizure free.
Jessica Keenan Smith has lived most of her life with epilepsy. She had her first tonic-clonic seizure — which used to be known as a grand mal seizure — at age 12.
“It’s what you would see in the movies — fall on the floor, turn blue, thrash around,” says Jessica, now 52. “Very scary to watch.”
After her seizures, she remembers feeling physical symptoms like exhaustion, headaches, and stress — which could create a cycle in which symptoms trigger another seizure.
“Research shows that every seizure [affects] the brain, which has a domino effect on the rest of your body,” says Jessica, of Haddonfield, New Jersey.
With time and medications, she learned how to recognize and manage her triggers. Her last seizure was 22 years ago, shortly after giving birth to her daughter.
Jessica is now the founder and CEO of Living Well With Epilepsy and the executive director of the American Society of Experimental Neurotherapeutics, a nonprofit that advocates for the development of therapies for neurological disorders, such as epilepsy.
Based on her experience managing epilepsy, here are Jessica’s top 10 tips for staying seizure free.
1. Take your medication every day
Consistency is key. Jessica has taken epilepsy medication for years, and she stresses its importance.
Her doctor first prescribed her a valproate, also known as valproic acid, a medication commonly used to treat her seizures. She later switched to Tegretol (carbamazepine) and then to Topamax (topiramate). She takes it every day.
“I know people discount the medications and ask themselves whether they really need to take them every day,” she says. Research indicates that medication compliance — taking your meds on time and when the doctor says — can reduce at least one of your sudden unexpected death in epilepsy factors, referred to as "SUDEP," Jessica says. "If you can manage at least one of your risks, do that.”
2. Ask about rescue medications
Rescue medications can stop a seizure or prevent a cluster of seizures. Jessica compares them to inhalers for asthma.
At one point, Jessica was being treated for ovarian cancer and frequently driving to Boston to help her two sisters care for their sick parents.
Because she was not sleeping, out of her routine, and incredibly stressed, she says, it “would have been a perfect scenario for rescue meds.”
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The medications are prescribed by a neurologist. Some options include Valtoco (diazepam), Nayzilam (midazolam), and Ativan (lorazepam).
“These medications really should be in the hands of anybody with epilepsy,” Jessica says. “They’re a backup to your normal medicine for abnormal circumstances.”
3. Get enough sleep
Lack of sleep is a common seizure trigger. After Jessica’s last seizure, her doctor stressed how vital rest is.
At the time, 4 months after giving birth, Jessica was caring for a newborn and commuting an hour and a half each way to work. It was shortly after 9/11, and her husband, a paramedic, was working 16 hours a day.
It was a wake-up call, Jessica says. “Get a good night’s sleep,” she says. “It is huge.”
4. Stick to a routine
Changes to your routine can trigger seizures. Jessica learned this during stressful times, like caring for her parents while they were battling cancer.
Today she lives a life of moderation.
“The things that entertain me are my garden and my crocheting, hanging out with my family, and my business,” she says. “It’s old-lady stuff that keeps me out of trouble.”
5. Exercise safely and regularly
Exercise can be intimidating for people with epilepsy, but it has many benefits, Jessica says.
She practices yoga, which helps her stay active without stress.
“I recommend you get in your exercise in a way that makes you feel safe and comfortable,” she says.
6. Stay hydrated
Some epilepsy medications can cause dehydration. Dehydration itself can trigger seizures.
“I am Gen X. We don’t drink water,” Jessica says jokingly. “My daughter drinks water like it’s going out of style, but it doesn’t occur to me to drink water. I put lemon in it and force myself to drink it.”
7. Check in with yourself daily
Jessica uses gut checks to monitor her mental and emotional health. She recommends puzzles or brain teasers to test your focus and memory.
“It helps me see where my mental faculties are, see where my memory is at, see where my emotional balance is,” she says. That sharpness check helps her prepare for the challenges of the day.
8. Advocate for yourself
Jessica calls epilepsy a “gaslighting” disease, and she emphasizes not blaming yourself.
“It helps to do a little self-talk to convince yourself: ‘I trust myself. I’m worthy. I know my body better than my neurologist. I know something’s wrong,’” she says. “You have to build yourself up so that you can advocate for yourself. And advocating for yourself is essential because nobody else is going to.”
9. Share your story
Sharing your experience can inspire others and connect you with them. Jessica’s blog turned into a website and global community for people with epilepsy.
“People from all over the world started asking for a way to share their story,” she says. Don’t underestimate the power of sharing.
10. Build a support system
Jessica found power in surrounding herself with a support system, even though it started small.
“Go online and find your people,” she says. “There are places to find support that are accessible to this community and that are not cost prohibitive. It’s good to have people who really get your epilepsy, even if they’re not people who have epilepsy. People who are OK with you having to cancel plans or feeling like crap or forgetting things constantly, whatever the case may be. They’re your people.”
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