My seizures started my freshman year of college after I participated in a 24-hour university fundraising event. I came back to my dorm, feel asleep, and woke up in the hospital. Little did I know, I had experienced a generalized tonic clonic seizure that night, which woke up my roommate.
Since that 1st seizure in 2006, my seizures have changed to focal impaired awareness seizures and my seizure frequency has varied over the years. Some years only 5 seizures, other years over 60 seizures. But they all have one thing in common – my seizures happen without warning, which is the scariest part for me. I’ve had them alone in an airport, on public transit, walking by myself to meet friends, while driving leading to an accident, and at work. Once during a seizure at work, I unknowingly hugged a coworker, but luckily it was a friend and he knew about my epilepsy, so it wasn’t awkward.
My journey with epilepsy continues, since my seizures still aren’t controlled. For the past year, I’ve been going through various tests – Neuro Cognitive, Wada Test, etc. – as part of the epilepsy pre-surgical evaluation process. This time last year I was preparing for my second stay in an Epilepsy Monitoring Unit (EMU), but this time for a stereo-EEG (sEEG). A sEEG is a minimally invasive procedure that uses electrodes placed directly in the brain to identify where seizures start. This was the last stage of my pre-surgical evaluation with the goal of learning exactly where my seizures start. It was a long 16-day stay in the EMU, but we learned a lot. We learned that my seizures start in both sides of my brain and that I’m a candidate for an RNS device.
Seizure Free Streak
Using what we learned, I moved ahead with switching my medicines and I recently went 8 months seizure free, which is my longest seizure free streak in over 4 years. I did have a breakthrough seizure this month, but I think about the different treatment options the sEEG taught me I have now, and I feel hopeful. I’m so grateful we did the sEEG, since we learned such valuable information to guide my care. I also say we since my husband was there by my side for the entire stay and I can’t imagine doing that stay without him.
Alison Kukla, MPH, is a tested leader with demonstrated success in coalition building, campaign management, and engagement strategy development in a variety of fields at the local, state, and federal level. Alison is a public health professional with a Master of Public Health in prevention science from Rollins School of Public Health, Emory University. Alison is also a Person with Epilepsy, an Epilepsy Advocate and formerly staff in the Obama White House and EPA.