Tyanna’s Story
I’ll start this off by saying Hey I’m Tyanna, I’m 23 years old and I’ve had Epilepsy for almost 7 years now.
I had my first seizure in December 2017 at school, I was 16 years old and in grade 11. I needed to go to my fourth period class and I suddenly didn’t feel good. This was the first time I have ever felt this feeling, I didn’t really know what was going on and it was terrifying. The ambulance came, I was at the hospital for a couple hours and then got sent home.
I had two weeks off of school after this since it was Christmas Holidays coming up. Holidays ended the beginning of January and my first day back to school I had another seizure, the next day or two I had another one. I woke up feeling scared, I didn’t know what was going on… my sugars were low and the glucose needle was horrifying to me. After this seizure I got kept at the hospital and stayed in the emergency room overnight since there wasn’t a room for me at the time. In the morning they moved me to a room, I stayed there for about 5 days and was flown to London Ontario.
I was originally being tested for Multiple Sclerosis because I had weakness in my legs, an eye turn in my left eye and I was generally just not doing well before I started having seizures. I was flown out early in the morning. When I got there they brought me to the Pediatric Unit and I got settled into my bed. The nurse took my blood and then I went to get an EEG put on my head, I was not excited for this. I think I was diagnosed with epilepsy the third day of having the EEG on my head but they still wanted to check for MS so I got a spinal tap, thankfully I was put under for that but it was extremely painful when the anesthetics wore off. I could barely walk. I started a medication called Keppra after getting diagnosed and it seemed to work well. After being discharged from the hospital I went back to the Ronald McDonald House with my mom who was my rock through all of this by the way. A day or two later we flew home and I was expecting everything to go back to normal. It didn’t.
I had no idea what was ahead of me. I tried going back to school but every time I went I would have a seizure, including my 17th birthday which sucked. The lights at the school were a trigger of mine, fluorescent lights are actually my biggest trigger. It got to the point where I pretty much wasn't allowed to go to school anymore. I missed the second semester of grade 11 and due to that I wasn’t able to graduate on time. I hated this.
My home was a safe place for me. It was the only place where I knew I wouldn’t have seizures, until I did. I felt like I wasn’t safe anywhere once that happened. If I’m being honest, summer of 2018 was when it started getting really bad. Especially April of 2018. I was put on the medication Topiramate on top of Keppra but I ended up being overmedicated on both of the medications which caused me to become extremely sick. I started having 20 to 40 seizures a day, I had no appetite, I was 103 lbs. I had multiple hospital visits and then I got admitted until I had to fly out to my appointment. The seizures didn’t stop, it was awful. I was there for a couple days then my mom, my grandma and I flew out to London which was the worst trip I had. I was having non stop seizures in every airport we were in. I was only supposed to be in London for an appointment but when my neurologist saw me she decided to admit me to get me off the medications I was on. I was upset because I just wanted to go home. I was there for a couple days getting off of my medications and getting put on a new one. I went home thinking my life must go back to somewhat normal now right? I was wrong again.
I went back home. Still having seizures, hospital trips and home visits with the paramedics. I think I found out I had PNES around the time too which is a whole other ball game and something that took a long time for me to accept. At the end of June 2018 my mom took me to Winnipeg to stay in the Epilepsy Unit for a week. I absolutely hated it and counted down the days until I could come home. Although I was still having seizures, the rest of the summer wasn’t too bad.
In September I went back to school and my seizures still weren’t under control and it was very hard for me to get into the habit of being back at school but my friends helped me a lot and everybody was doing their best to keep me safe which I appreciated. I finished that year of school but had to go back for an extra year to finish my credits to graduate.
I don’t remember when but I was started on a medication called Lamotrigine and that has been the best medication for me. It has controlled my epileptic seizures, when my medication would need an adjustment I would start feeling off and have seizures again. But I’ve been on a good dose for quite some time now. My Psychological Non Epileptic seizures were almost more difficult for me, I had to learn how to try to control them and the anxiety that was causing them but it’s never been easy.
At times my seizures were endless but my last one was seven months ago and the one before that was 6 months before which is awesome, when I’m not prioritizing myself and my health is when I worry about having one. I’m grateful to be seizure free for that long because I know not everybody gets to say that. I didn’t have normal teenage years, but I got through it and I applaud myself for that, she was a tough girl. I couldn’t be more thankful for everyone who helped me. I got through it because I had so much love and support around me.
Finding a cure for Epilepsy would be so amazing, not only for me but everyone who has been affected by it. For the people who struggle with it and their families, for the people who’s lives have been taken by SUDEP. I would love a cure, to never have to worry about having a seizure again sounds like a dream. Raising awareness is so important because it makes others aware of what to do if someone has a seizure around them.
Sending my love to all the epilepsy warriors, if we can get through this we can get through anything.
The courage of those living with epilepsy,
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