Amanda’s Story

I started having “spells” at the end of eighth grade. I would have them as I was taking a shower for school and I would come out of it, already in my bedroom drying and getting dressed for school. I thought it was nothing big, so I didn’t say anything to my parents until the beginning of ninth grade when they were still occurring. At that, I was put in the hospital for a week to make sure that I was accurrately diagnosed. After a week of testing, the doctor officially said that I had complex-partial epilepsy and told us that it was unlikely I would have it controlled because the timing was considered adult-onset. I remember my parents sitting with me in the dr’s office as he told me this, and my mom crying, my dad being stunned and shook up, and all I did was say “so what do I do next?”

My sophomore year in high school I tried the ketogenic diet for six months. It was hard to deal with. I was able to go for two months without seizures, but when they started back again, I stopped after a few months and then went back to a regular diet.

After high school I was ready for college and a month before I went for school, I had a grand mal seizure at home with my family. My parents weren’t sure that I would be able to take on school, but I was defiant that I would do it and still said to let me go. Mom and Dad dropped me off at school and I was thrilled.
For the first semester of college I was able to go almost 3 months without any seizures until I got an unfortunate call that my parents had decided to get a divorce. About 3 hours later I once again had a complex-partial seizure. After that, they went back to occurring about 2-3 times a week.
My sophomore year in college I almost went through with surgery. Unfortunately, after the halo was put on, my surgery was put on hold for over 8 hours because of emergencies that were happening. I couldn’t deal with the pain anymore and told the doctors to get the halo off my head. It took the arguing of my parents to help me, but they finally took it off. At that point I decided that I was going to put surgery on hold until I truly felt the right time.

In 2007 my new neurologist suggested that I have the vagus nerve stimulator implanted. Unfortunately because I have such a sensitive body, it took me several years for my brain and body to work together.

Because it still did not fully control the seizures, I was finally rolled into the surgery on July 29, 2009. I spent 1 week in ICU, doing neurological tests and my second surgery was August 4, 2009. They did a left temporal lobectomy and sent me home a week later.

The surgery did not fully control the seizures and a few months later I ended up going through a divorce. My brain dealt with it not in the best way, and I started having grand mal seizures every month for over a year.

On August 2011 I lost a friend of mine to SUDEP. It made me realize how short life is and I told myself that I would try even harder to show people how far you can get even with a disability.

When I finally became approved by the FDA January of 2012, I finally went a full year without grand mal seizures. After another grand mal at my aunt’s home before I was about to leave from a vacation in Florida, I realized I had to start over with the counting, but I have now gone about 18 months without any grand mal seizures.

Over the past year and a half, and especially the past few months, I have finally realized that the stress that life brings upon someone can be health-changing. I have come to accept AND appreciate the challenges that life brings because it has helped me grow and learn who I am. Every day is a new journey that I am excited and so blessed to have been given the chance to take.

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