Why Epilepsy Awareness Matters to Me

For 29 years, I had no idea I was living with daily and nightly seizures. I believed everyone occasionally experienced sudden waves of bizarre sensations and brief lapses in awareness. I now know that’s not the case. Epilepsy often goes unnoticed when you’re not having tonic-clonic seizures. This is exactly why epilepsy awareness matters! 

From January to March 2024, life was pure chaos. I was adjusting to my new reality as a single mom of three and unexpectedly advocating for myself in ways I never expected, even filing and finalizing for divorce on my own. On top of that, two of my kids underwent surgery during that time. The overwhelming stress, combined with severe sleep deprivation, created the perfect storm and led to my first known tonic-clonic seizures.

On March 21, 2024, I had two tonic-clonic seizures in my sleep, just hours apart. After the first one and a trip to the ER, I came home and went straight to bed. I woke up to find my bedroom full of paramedics. I was so comfortable, all I wanted to do was go back to sleep. I had to be carried to the ambulance, and to make matters even worse, I was only in my underwear.

At the hospital, I had an MRI, CT scan, bloodwork, and thankfully was given some pants. Doctors discovered I have an enlarged, fluid-filled brain ventricle that I’ve had since birth. After more tests and several neurology appointments, I was officially diagnosed on April 29, 2024, with focal nocturnal epilepsy. While the diagnosis was a shock, it was also incredibly validating. I always knew something was off with my sleep. For years, I blamed myself, thinking I was lazy or undisciplined for struggling to wake up like a “normal” person. But the truth is, I’ve had a neurological disorder my entire life.

Since then, I’ve been reexamining everything I thought I knew about myself. I’ve become hyper-aware, doing deep dives into epilepsy research, journaling my experiences, and bringing all of it to my neurologist. He now believes I’m also having temporal lobe impaired awareness seizures and catamenial epilepsy, in addition to nocturnal seizures. I'm currently waiting to complete a 3-day at-home EEG and working toward a more detailed diagnosis.
I can't drive right now, which is challenging as a single mother.

One of the hardest parts of this journey—aside from losing my ability to drive—has been coming to terms with the fact that my struggles can't be easily “fixed" with therapy or meditation, for example. I’m still learning to manage my epilepsy and accept myself as I am.

I went nearly three decades without knowing I had epilepsy. I know two other adults in my life who also received a late diagnosis—and I know there will be more. The Epilepsy Foundation has been a huge resource for me. Learning more about the disorder and reading others' stories has helped me feel seen and less alone. Now, I want to do my part in raising awareness and educating others about the many faces of epilepsy. Seizures don’t always look like seizures.