Alison’s Story
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.
Uncontrolled Seizures
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.
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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.
Asheli Harris
Hello Queen, I will be having my stero eeg 09/2024. Since 2017, living secretly with seizures with my husband working nights he barely noticed or thought he was my diet. I wanted to know how was staying in the hospital overnight. The worst about the last experience I hated not being able to go to the restroom by myself. I starved myself watched my intake of fluids, and did everything that didn’t cause assistance. My issue is wanting to be strong all the time.
Jessica K. Smith
Oh lady. No more suffering in silence. I’m so glad you are on the road to getting treatment. You can be as strong as you are but until the seizures are treated for realzies they will always win. Reach out on Tiktok or the facebook group and feel free to schedule a discovery call (its free). Keep me in the loop.
You are in my thoughts.
Jess
Anonymous
Hi Asheli, thank you for sharing your story with me. Please know you don’t have to suffer in silence, there’s a community here to support you! This long of a hospital stay was challenging, but my fiance was there the entire time and helped when I needed things since I was stuck in bed. The hospital care team was also amazing, supporting us with whatever we needed. I understand not being able to use the restroom by yourself, it’s not fun, but we learned so much during my stereo EEG that has improved the care of my seizures. If you want to connect before your stay, don’t hesitate to reach out: alisonkukla@gmail.com