Sheena’s Story
My name is Sheena. I was diagnosed with Epilepsy when I was 25, I am 37 now so I have been living with it for a long time.
For about 6 months prior to my diagnosis, I was misdiagnosed as someone having panic attacks. I was put on a medication for people suffering from depression and anxiety which unfortunately reduced my seizure threshold and caused me to have my first grand mal. Prior to that my seizures were just small ones. After having the grand mal my case was taken more seriously. Even though the symptoms that happened during my small seizures were a textbook example of what happens during one, that was not enough for my doctor at the time and her words were to “stop being dramatic”. After having that grand mal my family doctor in the office changed and everything slowly got better.
One of the major challenges having epilepsy is the lack of needed medical care and research. I have had to travel 8 hours just to see a neurologist because the one at the time in my town was not adequate enough to treat someone with epilepsy. It also took many years before the province’s Epilepsy specialist could take on my case. The medical system for epilepsy is so underfunded that there is only one Epilepsy Specialist in all of British Columbia.
The only medication I have ever taken that actually worked to stop my seizures was Keppra. Unfortunately, Keppra altered my personality so much it turned me into a different person. I went from my normal nice self to someone very angry and mean. Thankfully once taken off I was back to my normal self, unfortunately, that also meant the return of the seizures. After that I was given Trileptal and Lamotrigine which helped but did not solve the problem. After a couple of years of repeated seizures, I was admitted into the Seizure Investigation Unit at the Vancouver General Hospital. It was known before my stay that I had a scar on my brain that became essentially a road block for the neurons in my brain to transmit properly, but it was also discovered while there that I have seizures in my sleep. At this point I had been diagnosed with epilepsy for 10 years but those seizures were never discovered until that stay. Being connected to an EEG machine 24/7 is what it took to truly understand how bad my epilepsy actually is.
After the testing it was determined that I was a candidate for brain surgery. My doctor determined that the scar on my brain would be removed and I would have an 80% chance of being cured. The surgery removed my entire left front temporal lobe leaving me with only ¾’s of a brain so I wish I could say that I am cured but, unfortunately, I am not. I am however much better, which is great. I no longer have seizures in my sleep and due to that I have actually been able to gain weight and finally become in the healthy range again. I had lost so much weight due to those seizures that I was down to 89lbs. Often people would say hurtful things to me like “you need to eat a sandwich” or “you look anorexic” and many more. They just didn’t understand that what they were saying was actually really hurtful.
Despite the many challenges that epilepsy has caused me, I still find a way to keep a smile on my face. What really helps is that I was raised by a very strong woman who gave me the words to live by: “If you are given a tougher road, it is because you are a stronger person”. That quote is truly what gets me through the bad days. Due to cancer, I lost her when I was young and before I started having seizures but even though she isn’t here I still feel her, and live by her words. Keeping her strength is what has helped me get my life back on track.
It took 6 years for a 2 year program, but in 2022, I graduated from the College of New Caledonia with a Web & Graphic Design Diploma. It took much longer than it might’ve taken others but I still accomplished it so I am happy. For a year my seizures got so bad I actually had to leave school for a bit but that didn’t stop me. I returned once I could. My stay at the epilepsy clinic was during a time I was enrolled in classes but my instructors and I still made it work. I would connect to my classes through zoom and was taught just as if I was right there. So, there I was sitting in the Seizure Investigation Unit, hooked up to a ton of machines all while still attending college classes. Times like those help to remind me that no matter what my challenges are I will find a way.
A life without Epilepsy for me is unimaginable. Because I have had it for so long it almost feels like it is a part of who I am, but I can guarantee, a life without it would be so much better and happier. For me one of the most frustrating challenges is constantly losing my license. Just when I get it back something will happen and I will lose it again. Other people do not understand how frustrating not being allowed to drive can be so a life where I never have to worry about losing my driver’s license again would be amazing.
To me a more important reason for a cure would be to help more than just people like me but also their family and friends. The many visits to the hospital that I have had, thankfully, have been easier for me because I always had someone by my side. During my seizures they have had to witness some pretty traumatic things causing them a great fear of me having another. This has caused serious cases of anxiety for people I love just because they care so much. Having a cure for epilepsy would not just help make my life better but also people I love and care about.
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.