Sara, 19, USA
When I was 13, I saw this girl have a seizure, and after that I was terrified I would have one. My mom assured me that seizures aren't contagious, and I wouldn't have one just because I saw someone have one. A few months later, I was getting ready for school, and I happened to be in the upstairs bathroom instead of my bathroom downstairs. I was brushing my hair and the next thing I know I am on the ground. I kind of hear a banging and parents saying “oh my gosh”. That's what I remember for that.
I then remember sitting on the couch in the front room looking out the window and an ambulance pulled up. I asked my mom if our neighbors were okay. And she told me it was for me. Time skipped ahead again; I was getting in the car and going to the ER with my parents. Apparently it's $1,000 to go in an ambulance, and we live close to the hospital. The hospital was a blur. I remember being rolled around, and I remember my dad talking to me and taking a picture of me with messy hair and me in a hospital gown. I guess a doctor came in and told us that it was probably a one time thing because a lot of people have a seizure in their lifetime. So I was relieved after that.
Then one day at school, I was in my computer class and my friend was talking to me about our science project that we should work on after school at 4pm. Instead of agreeing with her, I looked at the clock and said, how about 2:15? And she said that's the time right now Sara. I then fell on the ground and went into a seizure. My friend called my teachers name and next thing I know I am in the nurses office and my mom and my teacher are looking at me.
Soon after that incident, I went to a neurologist who diagnosed me with epilepsy. I was absolutely DEVASTED!! I was put on Keppra, and for 6 months it worked. Then I had another seizure. Over the next two or three years I had more and more seizures, and I was at the same time being tested on. I had all sorts of tests done. EEGs, MRIs, blood tests, I had a 3-5 day EEG where I had to be taken off my meds gradually in the hospital, so I was forced to have seizures. That was the scariest experience of my entire life. I had two or three grand mal seizures there.
When the results of it came back, an epileptologist looked over the results and seemed disappointed that I wasn't a candidate for surgery. However, he did want me to get another MRI done, but this time a more in depth one. So after that MRI, I found out the reason I have seizures. Apparently when I was a baby, some neurons in my brain didn't form correctly. I don't know why I didn't have seizures for 13 years, but that's what happened. So I finally got on two medications that made it so I only had complex partial seizures. Gradually I've tried others that turned out to be absolutely terrible!! But now I'm on three medications: Keppra XR, Lamictal XR, and Trileptal. I have simple partial seizures now.
Last September, I got the VNS put in. That stands for vagus nerve stimulator. It has really helped me and I am so grateful. I still have clusters of seizures every month for a day, but it's been getting better, and it usually takes a year or so to work all the way.
Some other thing I want to mention is embarrassment. Having seizures has been so embarrassing and I've felt stupid. People don't always understand what is happening, because every seizure looks different, depending on the type and person. I've had to tell tons of people over the years, and I've gotten different reactions. At first every time I had a seizure in front of someone, I would cry. Now I just pretend nothing happened, but deep inside I'm so embarrassed. I've told people that before, but they say “oh don't be embarrassed”. But that's like telling someone with depression, oh don't be depressed. You can't just tell someone that.
It really helps to talk to other people experiencing epilepsy, so I've found forums on websites that I love because they know what I'm going through. I talk to my family and friends about it, but it's not the same. One of my friends’ mom has epilepsy and my friend has been around her whole life obviously. So I feel totally comfortable around her. I have had a grand mal seizure in front of her too.
It's definitely not easy and it's changed my life. I can't drive, and when I was 16, all of my friends were getting their licenses, and I couldn't. That was really hard for me. I have my hard days where I get so angry and sad about epilepsy, but I also have days where I feel good about it.
- April 15th, 2015
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Twitter: @shirtlessedward
