Tiana’s Story
My whole life I was a healthy kid. I was happy, I played sports, and I did well in school. I never had any health issues, except a cold once in a while. I went to school every day, and in grade 11 I started driving myself, and one of my best friends. I had a coffee one morning, something I typically didn’t do. I guess I had decided to switch it up that day. All my classes went the same as every other day. Nothing out of the ordinary. I remembered sitting in my last class of the day, and then waking up in the hospital 6 hours later, confused, scared, and sore. I remember slipping in and out of sleep a few times while there, but my mind didn’t really go back to normal until we were leaving the hospital. We were told later by witnesses that I had mentioned not feeling good, and was panicking after the episode.
I never thought much of it, like it was a fluke or something, considering I was otherwise perfectly healthy. I had my first EEG and a CT scan done, and when I went to get the results, to my surprise, it was epilepsy. At the time, I had no idea what this meant for me or my future.
As my peers started finding out, lots of them started avoiding me, or saying rude things about me, or even to me. That was hard, especially because I couldn’t control it. And I was embarrassed. But my family stayed supportive and I had a few close friends who had my back through the whole thing.
I started Keppra, and even on an incredibly low dose, my side effects made it difficult to function. I slept 12 hours at night, and took a nap every day. When I wasn’t sleeping, I was pretty much always crying. That wasn’t ideal, for someone who was still in school and trying to keep my life together with this new diagnosis.
Not long after starting Keppra, I was switched to Clobazam. I was on that for almost a year, and again, the side effects were not in my favour. At one point, we also added Valproic Acid to the mix, but it was still not working for me.
I got a few more longer EEG’s done, to try and really figure out what my diagnosis was, further than epilepsy. My doctors came to the conclusion after almost 2 years, that it was likely Juvenile Myoclonic Epilepsy, or JME. After JME was diagnosed, we decided that medication wise, Lamotragine was our next best option. However, after so many failed medications, and the way they made me feel, I was hesitant to start meds again. So for about 6 months, I was medication free.
Just recently, I’ve started taking Lamotrigine, in hopes that in a few months I will be back to driving, and be more independent. I have always felt as though my epilepsy has held me back, and I am unable to be as independent as those around me. It was very tough on me, feeling like no one understood what it was like, and I had to rely on everyone around me, for everything. I never realized how many other people were in this community, and have been through the same things I have. I’ve learned, over the course of my experience, that epilepsy is not something to be ashamed of. It makes me unique from those around me, and I have stories that no one else has, from living with this disorder.
I’ve always known about seizures, and had a very vague understanding of epilepsy, up until it became such a huge part of my life and who I am. There's lots of stigma around epilepsy and seizures, and I am doing my part trying to break that stigma and educate the people around me as best I can, through social media, and educating the people around me.
Just this year I graduated highschool, moved out, started university, got a job, and even got a dog. I believe people with epilepsy can do anything that anyone else can do, and I’ve learned to embrace this part of who I am. Epilepsy is a scary condition, and it’s definitely not easy, but it has made me so strong, and incredibly grateful for the things I have been blessed with in my life. I am so thankful for the amazing people surrounding me, who love and support me, and see me for more than my epilepsy.
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