What Does Living Well With Epilepsy Mean to You?

Look for a care team you’re comfortable with so these conversations are easy and encouraged, says Kiriakopoulos. Whether it’s your primary care provider, a community neurologist, an epileptologist, or epilepsy nurse specialist, you want a sense of teamwork.

“Setting treatment goals and making decisions about therapies works best when there's shared decision-making between the healthcare provider, who brings expertise and experience, and the informed and activated patient, who shares their health goals and expectations,” she says.

Advocate for Yourself

It also helps to have a good connection with your healthcare team if things aren’t going well with your epilepsy management. If your seizures aren’t well controlled, you’re struggling to keep up with your medication schedule, or you’re having trouble with medication side effects, bring it up.

“Epilepsy can be a complex and dynamic illness that changes during the course of a person's lifetime,” says Kiriakopoulos. “When you communicate feelings of concern and any limitations to your care team, that can lead to new treatment and support approaches.”

For most people, care from a primary care doctor or community neurologist works well. But for others, seeing a specialist is vital. About a third of people with epilepsy develop drug-resistant epilepsy. This means you’ve tried at least two medications and your seizures haven’t improved. When that happens, the next move is finding a higher level of care.

“Drug-resistant epilepsy is a red flag that you need evaluation at an accredited specialized epilepsy center from an epilepsy specialist,” says Kiriakopoulos.

This will give you different options for specialized treatments, like medically prescribed diets, neuromodulation therapy, and surgical options. Epilepsy centers also coordinate care with other specialists who help manage conditions closely related to epilepsy such as mental health professionals and cognitive rehabilitation specialists.

Track Your Seizures and Their Triggers

One practical way to take an active role in your care is keeping a record of your seizures, as well as details about what may have influenced them. Over time, there may be patterns that help you better understand your condition. You might notice your seizures happen more often after a poor night of sleep, during periods of high stress, or when you miss medications, for example.

“Once you identify triggers for your seizures, you can start to avoid or manage situations or behaviors that might increase the likelihood of seizures,” says Kiriakopoulos.

Keep track in ways easiest for you, whether that’s pencil and paper, a note on your phone, or an app. Most importantly, share the information with your doctor, and prepare any questions you have beforehand so you can make the most of your visit. Appointments can often be short, says Kiriakopoulos, so come ready.

“It's tough to get everything into a 30-minute clinic visit. But if you've given it some pre-thought, it allows for focusing on your needs, so you can optimize time with your clinician,” she says.

Even better, she says, spending time thinking about how you are and what your questions are helps you assess where you are in your epilepsy journey, and make adjustments as needed.

Check Your Everyday Habits

Factors like sleep, exercise, diet, and emotional well-being impact your overall quality of life. Epilepsy can influence some of these habits, and vice versa, so addressing them is key in managing your condition.

For example, sleep and epilepsy are closely linked. Not getting enough sleep can be a trigger for seizures, but epilepsy can also impact sleep and make it more difficult.

“We also know that for some people, epilepsy can disrupt sleep and worsen existing sleep disorders,” says Kiriakopoulos. “And that certain seizure medicines can impact sleep or cause excessive daytime drowsiness and napping. That disrupts regular nighttime sleep schedules, or makes it harder to fall or stay asleep.”

Working on your sleep quality with your epilepsy team can help break this cycle, reducing seizures and enhancing your overall health.

Stress is another major seizure trigger and can also lead to higher levels of anxiety and depression, which are already common in people with epilepsy. Prioritize stress relief practices in your daily life like relaxation exercises, mindfulness, or therapy. Even medication can improve both your emotional well-being and your seizure control.

Don’t discount your diet. While a balanced diet is important for everyone, it can have a big impact on people with epilepsy.

“If you’re eating well, that can lead to having good energy for an active lifestyle. That can lead to sleeping better, and your mood is improved,” says Kiriakopoulos. “All of that helps improve seizure control.”

Build Community, Empower Yourself

Research has shown that epilepsy self-management programs can have a positive impact. They teach practical skills like understanding your triggers, setting goals, solving problems, and using strategies like mindfulness to manage day-to-day life with epilepsy.

These programs are available through the CDC’s Managing Epilepsy Well program, academic institutions, and the American Epilepsy Society. They include:

• HOBSCOTCH (Home-Based Self-Management and Cognitive Training Changes Lives)
• MINDSET (Management Information and Decision Support Epilepsy Tool) 
• PACES (Program of Active Consumer Engagement in Self-management in Epilepsy)
• Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) 
• SMART (Self-Management for People with Epilepsy and a History of Negative Health Events)

They also connect you with peer support. You can join a group or work one-on-one with trained professionals, many of whom live with epilepsy themselves.

“It's good to be in a room with people with a similar diagnosis, who understand what you’re going through,” says Kiriakopoulos. “Stay connected, stay informed, reach out, and engage your medical and your personal support. Know you’re not alone.”