Living With Epilepsy: 5 Self-Care Tips for Mental Health

By Michael McKenna, MSW,
Patient Engagement Specialist at NeuroPace

Understanding the link between epilepsy and mental health

People living with epilepsy are likely to experience mental health challenges, such as anxiety and depression.

The relationship between epilepsy and mental health presents complexities that require attention and care. It’s important to address these aspects alongside seizure treatment.

Living with anxiety and seizures

My journey with epilepsy began more than 25 years ago when I started experiencing massive seizures as frequently as once or twice per week. The seizures could knock me unconscious, break my bones, dislocate my joints, tear my muscles, and sometimes even briefly stop my heart.

Epilepsy also had profound effects on my mental health. I experienced stress over whether I could live a normal life and live independently with epilepsy. And I had anxiety over the potential for sudden unexpected death in epilepsy (SUDEP).

I spent years of my life essentially on hold while I waited for an effective seizure treatment for my drug-resistant epilepsy. One day, I realized I was tired of waiting for someone else to do something. So, I decided to focus on taking charge of my life.

I went back to school and pursued small daily goals that made me feel good — whether playing with my dogs or just making someone laugh. As terrifying as my seizures were, I was also amazed at my body’s resilience.

Finding relief with self-care and the RNS System

Finally, during my first semester studying social work at Arizona State University, I got the RNS System. Along the way, I also used some of the class topics I was studying, like mindfulness and self-care practices.

These practices continue to be incredibly beneficial. Slowly, I gained some control, and eventually full control, over my seizures.

Here are a few of the practices that I have found most valuable.

1. Be present and self-aware.

I take time to appreciate the positives in my surroundings and the things that bring me joy. For example, on a hot day in Phoenix, I discovered happiness simply in the shade of a tree. I found a sense of community with three strangers who joined me in the slim, cool shadow cast by a light pole while we waited for a bus.

2. Break down “impossible” tasks into manageable pieces.

I used to live about a mile from the nearest grocery store. Instead of getting discouraged by the distance I had to walk carrying heavy bags of groceries, I took some deep breaths and focused on the first three squares of sidewalk in front of me.

Every time I reached the end of those squares, I thought, “I did it!” As I passed another three squares, I repeated, “I did it!” Then another, and another. That’s how I got home — three squares at a time.

3. Sprinkle happiness breaks through your day.

Whenever I feel tired or sorry for myself, I take a couple of minutes to play with one of my dogs. Just a few minutes of a happiness break has therapeutic effects that last for hours.

Mindfulness can be as simple as taking a minute to look at a passing cloud. The important thing is to narrow your focus to the present moment. That will allow you to refocus your brain and calm your mind and body.

4. Take a deep breath and relax.

Before I received the RNS System, my body tightened up to the point where my seizures caused injuries. This continued for the first couple of years I had the device (before I achieved complete seizure freedom).

Mindfulness helped me realize that my body was always tense living with epilepsy. Now, I use meditation and breath exercises to help me relax.

I take deep, slow breaths. I mentally scan my body to locate and release muscle tension and other areas I need to calm. The therapeutic effects last into the night, helping me sleep better, which is another huge part of self-care for me.

5. Pay attention to how you feel.

I noticed that I would sweat a lot, even after coming into an air-conditioned setting, from the hot temperatures outside. I took brief notes about how I felt in my seizure diary. I used a shorthand code (for example, code A equaled nighttime seizure) that I developed with my doctor.

My neurologist compared my diary entries to recorded data from the RNS System that showed upticks in my seizure activity. It confirmed that heat stress is one of my triggers. I used the same diary method to determine that carbohydrates are triggers for me, too.

Seizure triggers are different for everyone. The important thing is to write it down if you feel something might be a trigger. Note the date, time, and any other helpful details so you don’t disregard them later.

Keeping calm and self-aware with fewer seizures

By practicing these simple and free habits, I’m able to accomplish pretty much everything I set out to do. I would advise anyone living with epilepsy to ask your neurologist about your treatment options and how mindfulness and self-care can help.

You could start with just a single minute of meditation. For me, one minute equals seven deep breaths — in through the nose, out through the mouth.

And if you find yourself facing a task that seems too difficult, take some breaths and just take it three squares at a time.