Tips for living with epilepsy
Managing epilepsy is about more than just taking medication; it involves adopting a balanced lifestyle, staying organized and surrounding yourself with supportive people. Here are some foundational tips to help you manage epilepsy and thrive.
Rachel Ward-Mitchell, an Epilepsy Program Coordinator at the Kentucky Neuroscience Institute, shares some foundational tips to help you not just manage epilepsy, but thrive while living with it.
Newly diagnosed with epilepsy
A new diagnosis of epilepsy can be challenging, but it’s also an opportunity to build a healthy, sustainable lifestyle.
About 50% of people with epilepsy become seizure-free on their first medication, so there’s hope for successful management. Even when seizures persist after failing two medications, comprehensive treatment options can be found at an accredited epilepsy center.
If you’re struggling with anxiety or depression, seek mental health support — these are common and treatable concerns for those living with epilepsy.
Remember, you’re not alone: epilepsy affects one in 26 people, and support is available.
Living with epilepsy requires intentional and proactive health and lifestyle management and risk reduction. With the right approach, you can lead a fulfilling and active life.
Epilepsy lifestyle and self-care
Effective epilepsy management includes maintaining healthy lifestyle habits alongside medical care.
- Good sleep and stress management are essential for neurological health.
- A balanced diet with an emphasis on fresh fruits, vegetables, healthy fats, and lean proteins and minimal processed and simple carbohydrates can boost energy and improve overall wellness. Some people with epilepsy benefit from diets like ketogenic or modified Atkins diets to reduce seizures.
- Regular exercise and a consistent daily routine also contribute to better overall health, helping you feel more resilient against the impact of epilepsy.
Managing medication and side effects
Staying consistent with medication is crucial. Missed doses are one of the most common reasons for breakthrough seizures.
- Pill organizers, phone reminders, and pharmacy services like auto-refill can help you stay on track.
- Be mindful of side effects, which can include drowsiness, stomach upset, or mood changes, and keep a detailed diary of your symptoms and seizure patterns. If you notice significant side effects such as mood changes, rashes, or vision issues, consult your healthcare provider.
Seizure safety and first aid
It’s helpful for friends, family and coworkers to know how to respond if you have a seizure. Providing them with a seizure action plan and encouraging them to complete a seizure first-aid course through the Epilepsy Foundation can equip them to help confidently.
Key steps include:
- Turning you on your side.
- Protecting your head.
- Not restraining you.
- Generally, there’s no need to call 911 unless the seizure lasts more than five minutes or involves an injury.
At home, small adjustments like preparing meals in bulk, opting for showers over baths, and using anti-slip mats can enhance safety.
Building a support network and advocating for yourself
Epilepsy can feel isolating, but support networks, both online and in-person, can help.
The Epilepsy Foundation and other community resources offer valuable connections. Disclosing epilepsy to friends or coworkers, though optional, can help them assist you in the event of a seizure. The Managing Epilepsy Well (MEW) Network is an online resource to help people with self-management skills.
At healthcare appointments, keeping a seizure diary, bringing a companion for support and communicating openly with your providers are all effective ways to advocate for yourself.
Anyone affected by epilepsy is welcome to join our monthly virtual support groups held the first Tuesday of every month. Contact Rachel Ward Mitchell at rkward2@uky.edu for the link.