At 14 years old, a week before my 15th birthday, I experienced what I believed to be a dream and didn’t think anything of it. This episode only lasted 15 seconds, and I felt okay. I had no thoughts of telling either of my parents; it never crossed my mind. A couple of weeks later, it happened again.
These episodes only happened during the night. More specifically, they occurred when I was falling asleep or just waking up. They became more frequent and more intense. After a few months, I realized something wasn’t right.
On July 31, 2021, at 1:00 AM, my mom was sitting by my bed and told me I had a seizure and that I was going to the hospital. I told her and my dad that night that I had known I was having seizures for months.
After that, it was a whirlwind of appointments, trips to the local emergency room, and overnight stays at the nearest children’s hospital. It was there that I was diagnosed with an incredibly rare seizure disorder called Periventricular Nodular Heterotopia, or PVNH, a one-in-a-million diagnosis.
In 2023, when I was 17 years old, I had a breakthrough seizure. After that, I began receiving treatment at a certified epilepsy center, started the trial-and-error process of different medications, and underwent multiple tests. During this time, over 14 medications failed to help me.
By the end of 2023, I was told that I was drug-resistant, which meant I would need surgery to try to control my seizures. In 2024, we began that journey. I underwent an intracranial EEG (SEEG), a 7-T MRI, a SPECT scan, a lumbar puncture, a MEG scan, PET scans, and multiple stealth CT and MRI scans. After all of that, it was decided that I would be a candidate for laser ablation surgery.
Initially, I was told by the children’s hospital that I had one area of PVNH on my left posterior ventricle. However, all the new scans revealed that I had multiple lesions. I was also diagnosed with cingulate epilepsy and intractable epilepsy.
Since receiving the laser ablation surgery in late 2024, I have also received a Vagus Nerve Stimulator implant, or VNS. I have finally found medications that keep my seizures at a manageable level. As of now, I experience focal impaired seizures, focal aware seizures, and gelastic seizures.
The biggest challenge during these years has been dealing with doctors who said that my seizures weren’t real and were instead panic attacks or anxiety. Also, because my seizures were not always convulsive, some people believed I was faking my condition for attention. This had a huge impact on my mental health and how I viewed my epilepsy.
I am now 19 years old and majoring in science in college. I plan to attend nursing school afterward and hope to specialize in critical care nursing, specifically neurointensive care.
To me, a cure would mean being able to live freely again. I wouldn’t have to worry about tracking seizures, carrying emergency medication everywhere I go, or going to the hospital every other month to get my VNS adjusted. It would mean that my family and every other family impacted by epilepsy could have freedom.