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2013 Feature Story – Emily Hoover

May 2015

It's hard to believe I have been on this journey for six years, and that this is my third Katie's Run. What's even crazier is that next month, I graduate from high school. I am taking a fifth year to determine my career path, as well as to continue playing rugby. Since I turn eighteen in August, I can no longer use my pediatric neurologist; I have an appointment with an epileptologist in Toronto in March of 2016. Yet I have never felt better. I have the support of my family behind me, as well as that of a boyfriend who treats me like a princess. I was able to write first semester's exams without seizing, something that has never happened before. In fact, I haven't seized since October. This is actually the longest I have ever gone, and it brings a smile to my face every time I say it. I am still working at Shoppers Drug Mart; I am going to be trained to become a supervisor in the coming weeks. I didn't believe it was possible to feel happier than I do right now.

May 2014

Since the last update, I have had a lot happen. The last round of testing ruled out surgery, which I have mixed feelings about. On one hand, I am very relieved; brain surgery is terrifying. I am not certain I could have gone through with it if it were necessary. But that only leaves medication to keep my seizures under control, which I have had limited success with. When I was in the EMU for a second time, I was med-free, so I was able to get the Keppra completely out of my system. The Topamax wasn't working as well as it could, so I've added Vimpat to my repertoire. I can usually go at least two months before anything funky starts to happen, although I have yet to clear my 4 1/2 month "hurdle". I was able to go to France with my school on March Break without any problems, which was an unforgettable experience. I would appreciate more control from my medication: (I mean, who wouldn't), but I'll take whatever I can get.

Emily's Original Story, 2013

My name is Emily Hoover, I am 15 years old and you will most likely meet me behind the counter at the local Shoppers Drug Mart where I have a job as a cashier. I would describe myself as an artistic person who is willing to do almost anything to help others. I am having a blast during my Grade 10 year, playing hockey, rugby, and curling. I will read just about anything I can get my hands on and love to learn new things but all the books in the world could never have prepared me for what the past 3 years have been like. This is my story.

My first seizure happened at school on April 19th, 2010. I was at school, doing seatwork. I started making these weird noises under my breath. Then the desk was rushing up to meet me, I had a glimpse of my classmates, and then everything went black. I woke up on the floor, stiff, confused, and unable to speak. We were referred to a pediatrician in Peterborough, who ordered a few tests and told me this was likely a one-time thing. I thought so too, until June when I had my second one at school during an assembly. It was then I was started on Tegretol to control my seizures. I thought, "Great, now we have a way to control these," but sadly it wasn't that simple.

I have a very low tolerance for the side effects of these drugs so these meds messed me up, to put it bluntly. I was permanently tired and confused, had nasty headaches, as well as feeling nauseated 50% of the time. I had another episode in July and then everything was calm for four months. I have learned that there is always a calm before a storm.

I started to have more than one type of seizure. Instead of just generalized seizures (which result in loss of consciousness and convulsions involving my arms and legs), I started to have focal seizures as well. These seizures last only about 30-45 seconds and during them I mutter under my breath and look as if I have spaced out. Winter 2011 was filled with many seizures, both focal and generalized. It was pretty frustrating. When I was diagnosed with epilepsy by my neurologist in November 2010, I didn't realize that someone could have more than one type of seizure. It turns out, my seizures start as focal seizures and sometimes remain that way and other times they rapidly progress to a generalized seizure. There are so many unknowns in this field.

March and April were a blur of focal seizures, with a brief lapse for a Grade 8 graduation trip to Quebec City, for which I was glad. We went back to see my neurologist before graduation and she recommended I start on Keppra, since my episodes weren't being controlled by only Tegretol. This medication now added mood swings to my list of unwanted side effects. Keppra helped keep the generalized seizures infrequent, but they were more intense than on the Tegretol and I was often exhausted after one. We were decreasing the Tegretol, so my Grade 9 year was full of both kinds. I only had one generalized seizure at school, and my focals aren't really that noticeable, so I was able to continue.

Once the Tegretol was forever gone, we discovered the Keppra wasn't working either. So I added in Topamax. Although I get blurry vision from time to time, I have almost no appetite and I've lost 20lbs and counting. Topamax has probably given me the best control I've had yet over my seizures but not enough to leave me seizure free for an extended period of time. Summer 2012 was still full of seizures, but Gr 10 has been relatively quiet. I haven't had a generalized seizure since December, and I can live with focal seizures for now.

My neurologist is attempting to figure out if I am a surgical candidate or not. Epilepsy surgery would permanently "switch off" the nerves in my brain that are short circuiting. He just has to figure out which area is involved and since all the tests I've had have been normal I spent a week at the Epilepsy Monitoring Unit at Sick Kids Hospital in November. There they do continuous video EEG monitoring and try to induce seizures so that they can "see" what is going on during a seizure. The result of the Monitoring Unit stay were not conclusive so recently I went for another MRI, an MEG (mangetoencephalogram), and a PET scan involving radioactive glucose which, sadly, did not glow as I was hoping it would! We are still awaiting these results.

As I was undergoing all of my testing, I was told some of them were still in the research stage and may not be made available to everyone as a routine test. These tests could mean the difference between being epilepsy-free or not for some. With your help, we can change that! Thank you for considering to participate in Katie's Run to support epilepsy research so that more people can lead healthy, productive and seizure-free lives!

Emily Hoover
Bancroft, Ontario

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