Sasha’s Story
I was 17 years old when I had my first seizure. My seizures started about a year after I suffered a traumatic brain injury in 2010. It all started in July 2011. During a church service, I started feeling weird, then the next thing I remember is being wheeled into an ambulance. Soon after that day, I was diagnosed with epilepsy. I would have 2 or 3 seizures a day, altogether having 20 seizures a month. I was soon diagnosed with complex partial, simple partial, and nocturnal seizures. At times I would have just the auras without a seizure following. I can have seizure activity anywhere on my left temporal, occipital, and frontal lobe. But my left temporal lobe is where the activity mostly comes from.
The longest I have been seizure free was 10 months and 4 weeks. Around that time, I was starting to have tons of breakthrough seizures. I was already trying my 6th medication at that time. Altogether I have tried and failed 6 different medications—Keppra, Tegratol, Topamax, Lamictal, Depakote, and Dilantin—along with a rescue medication, Ativan. My seizures were happening more frequently, and the auras wouldn’t stop coming. It seemed like the auras were constant. We decided late in 2015 that we needed to get a second opinion in order for me to improve my quality of life and start living a better life. Little did we know that early in 2016, during a doctor’s appointment, we would be told that I had Refractory Epilepsy. Uncontrolled, drug resistant epilepsy. We decided that VNS therapy would be the best option on top of the 6 pills a day I take. I would never be a candidate for brain surgery because of the multifocal activity.
On February 18, 2016, I had VNS surgery. Since surgery, my seizures have decreased dramatically. I still have seizure activity in my sleep and continue to have auras. But even the auras have decreased dramatically and continue to each day.
We are hoping one day I will be able to be a more independent young adult, take absolutely no medications or at most 1 or 2, and finally be able to drive. Having VNS surgery has been the best decision we have ever made. I was able to go back and finish college for CNA (Certified Nursing Assistant), and I now have a full-time job as a CNA. My co-workers understand my epilepsy and are there if needed. I am an ambassador for the Danny Did Foundation, a VNS therapy ambassador, and the special project coordinator for the Epilepsy Foundation of Nevada.
Ever since my diagnosis, it has been my mission to spread epilepsy and SUDEP awareness—no matter where and what I am doing. No one knows what it’s truly like to live with epilepsy unless you are living with it. The pain, the never-ending feeling of always being tired and people not understanding why, the constant fear of when the next seizure will come, praying that next seizure won’t come while you’re hanging out with friends or during that interview, when you have to explain to people why you are swiping a magnet over your chest, doctor’s appointments, EEGs, MRIs, blood tests, medications, side effects, hospitals, surgeries, stigma, discrimination, and so much more. But we don’t look for sympathy, we look for understanding and for you to learn what epilepsy is. Don’t let epilepsy stop you from loving life and being you. Always keep thriving.
“Life is not meant to be lived with multiple medications and seizures you can’t control.” —Sasha Pina