Epilepsy looks different depending on the person, but here are some strategies for managing symptoms and staying safe.
AS VACCINATION RATES rise and municipalities begin to reopen, remembering simple social behaviors—like making small talk with co-workers or hugging a parent hello—is suddenly baffling. For people with chronic illness like me, I need a refresher on how to manage it in the “real” world. Fortunately, my strategies are one touch away on my smartphone.
I was diagnosed with epilepsy at age 32, and it surprised me to learn that epilepsy is more complicated than treating seizures. It’s a fickle condition because seizures and their triggers are individual and inconsistent, prompting me to continuously monitor my daily activities, emotions, and anti-epileptic medications.
Under pandemic restrictions, my personal epilepsy guidelines slowly blurred. It only took one “normal” weekend and the seizure that came with it for my memory to snap back. Dating and family gatherings require more monitoring when they happen in-person instead of the computer screen from my couch.
Like many health conditions, epilepsy makes me feel a loss of control. Over the past four years, I’ve cultivated strategies to mitigate seizure frequency, care for myself when they occur, and cope with epilepsy’s daily challenges. To find empowerment, I just have to pick up my phone.
Ready, Set, Stop
Staying mentally balanced is important for everyone, but especially for those with epilepsy, as anti-epileptic drugs and seizures are both energy drainers. One simple tip is to take frequent breaks throughout the day.
It’s counterintuitive that pausing brain activity improves cognitive function. A break sounds simple enough, like regular exercise or meditation, but it requires accountability to make it happen.
I use my phone to set an alarm 20 to 45 minutes from the time I sit down at my desk. There’s something jarring about hearing the same sound that wakes you up in the morning while you’re in the middle of writing an email. Just like I do when I wake up, I hit the snooze button twice before begrudgingly getting up from my desk to pick up a magazine, grab a snack, or step outside for a few minutes.
University of Chicago neurologist Richard Kraig explains the importance of breaks for a healthy brain. “Environmental enrichment such as increased intellectual, social, and physical activity can reduce subsequent neurological disease by half, including epilepsy, as well as help restore brain and mental health after the onset of injury,” says Kraig. “For people this can be as simple as periodically taking a casual walk in nature and daydreaming.”
Despite my initial irritation at the interruption, I come back to my desk feeling refreshed with renewed energy.
An Easy Escape
Because stress is a common trigger for seizures, sometimes we need more than a break—we need an immediate escape. This is when I pull out Wordscapes, a friendly crossword app, and immerse myself.
Creating words from a handful of letters, along with the app’s outdoor scenes, grounds me. Word games require mental engagement without emotional attachment. Whether on a crowded bus or fretting over an upcoming meeting, the problem-solving aspect of Wordscapes immediately takes my focus off the stressor. The app exudes positivity with its bright color palette and encouraging messaging.
Word gaming isn’t appealing to everyone, but there are other stress-relieving game apps to check out. I encourage you to find an app that requires focus while providing positive energy.
The Seizure Diaries
Keeping a record of seizures is important for diagnosis, treatment, and lifestyle. There are nearly 100 different seizure tracking apps, making it daunting to find the right one. After testing several, I’m partial to SeizAlarm due to its simplicity.
The diary portion of the app, where I log my seizures, is simple and free. SeizAlarm provides sections to detail the seizure type, emotional state, potential triggers, description of the seizure, and post-seizure description. Each section has a menu of options to choose from. For example, the “Potential Triggers” section lists 10 selections, such as “Stress” and “Hormonal fluctuations” and includes a space to add details.
It’s common to not remember the events before or after a seizure, much less the seizure itself. Providing descriptors prompts my memory, helping to create a more accurate account. Seeing these symptoms and triggers listed in the app is also comforting, as a reminder that they’re normal.
When I’m in a seizure cluster (as in, having several seizures a week), I subscribe to the $14.99 monthly plan for some additional features that help keep me safe. Upon opening the app, the home screen has two buttons. One alerts my emergency contacts via text that I’ve just had a seizure. The other button releases an audio message I’ve previously dictated giving instructions if a kind passersby tries to help and I’m unable to communicate. Everyone has different needs immediately following a seizure, and my recorded message instructs people not to call an ambulance and my that unresponsiveness is normal.
Unfortunately this app is only compatible with the iPhone. An Android equivalent is Seizure Emergency Alert, which also provides logging features and emergency notifications.
Find Comfort in the Familiar
A seizure is an overactivity of neurons in the brain, often leaving people exhausted and disoriented. In the days after, I just want perfunctory comfort. But with my cognitive abilities shot, I can’t remember where to find it. The Notes app on my phone lists all of my post-seizure go-to’s.
The note lists my favorite movies, podcasts, and restaurant deliveries. Film and food aren’t ground-breaking coping strategies by any means, but having a selected inventory of what to do in a post-seizure state has proven helpful for me, and hopefully will for you, too.
“The postictal [post-seizure] state can definitely be a scary time for patients,” says Elizabeth Gerard, a neurologist who specializes in epilepsy at Northwestern Memorial Hospital. “They may have more difficulty with language or decision making. You can feel drained or more anxious, so having calming things to go to is helpful. And, of course, there’s the emotional aspect of having a seizure.”
The psychological fallout of a seizure might require calling upon your favorite people, too. Reaching out isn’t easy, especially when you can’t remember who to call or text. The post-seizure note also includes people to connect with for emotional support.
When You Need a Hug, Turn to Twitter
No matter how much encouragement we get from our loved ones, epilepsy can still feel like a very solitary experience, especially after a seizure. Connecting with people who also struggle with the condition is helpful, but also hard to find.
Empathy certainly isn’t the first thing that comes to mind when we think of Twitter. But there’s a way to tailor your experience on the platform by using Twitter lists, which let you curate content from a self-selected group of people. After searching #epilepsy, I accrued a list of users who tweet frustrations, encouragement, sadness, or start conversations of the epilepsy experience.
Safe conversation is a healing practice, according to Tom Stanton, executive director of Danny Did Foundation, a nonprofit dedicated to epilepsy awareness. “From the grocery store to a board meeting to an event, we have these conversations wherever we can. It gives the space to talk about epilepsy without feeling judged or stigmatized,” he says.
I’ve found the same safety net in my “Epilepsy Peeps” Twitter list. The brevity of a tweet offers manageable reading if my mind is tired but looking for solace. I sometimes reply back with all my brain can muster—a heart emoji. Or other times I don’t respond at all. That’s the beauty of Twitter sometimes: I can find community without spending energy.
Turning my phone into the place that holds my coping mechanisms provides reassurance for this unpredictable condition. Hopefully some of these strategies are helpful for you or someone in your life also living with epilepsy.
Source: www.wired.com, Landis Weidner