This personal story was submitted to Living Well With Epilepsy anonymously.
Growing up seizures were something I had seen in movies, something they taught about in school, and something I never thought would become a part of my life. That all changed, however, in June 1995. While camping in Georgia with several friends I had a tonic clonic (formerly known as grand mal) seizure. Since this was my first seizure ever my friends took me to the hospital. The doctors told me that I had had a seizure because I was dehydrated and tired and to let them know if I have any more.
Fortunately, I did not for many years. I was able to graduate from high school and start college at Vanderbilt University. However, during my freshman year I began to have what was eventually diagnosed as simple partial seizures. Up to 20 times a day I would start blinking rapidly and hear strange noises. These seizures were often brought on by loud sounds such as airplanes flying overhead or starting a hair dryer. After several tests including PET scans, MRIs, EEGs, CAT Scans etc., I was diagnosed with Epilepsy. And after trying several different medications I found one that controlled my seizures.
Though I had the occasional simple partial seizure, I graduated college in 2001 and drove across the country to start teaching 2nd grade in Seattle, WA. I was not going to let Epilepsy stop me from being a teacher; something I had wanted to do since I was 8 years old.
Things were going well for several years. I had the occasional seizure now and then, but for the most part they were under control. I continued to teach elementary school and got married. Then in 2010 my medication became less effective and the seizures came back. This time they were complex partial seizures and were much more debilitating. I had to take a medical leave from teaching. I began to miss out on a lot of activities I had previously enjoyed because of the seizures I was experiencing. Lack of sleep was still a trigger, but even making sure to get enough sleep did not help. Increasing my medication was not successful, either. Having clusters of seizures every 8-10 days became very frustrating and difficult to live with.
I decided in May 2012 that it was time for a change. I made an appointment at the Mayo Clinic in Phoenix, AZ for some very invasive testing to see if I was a candidate for surgery. I checked into the hospital on July 11, 2012. During the first procedure they implanted EEG electrode probes in my brain. They then waited for me to have seizures. After 8 days the doctors decided they had enough data and were confident that the seizure foci was on my right temporal lobe. On July 19, 2012 I had my right temporal lobe removed.
A year later I am thrilled to say that I am seizure-free. I did not return to teaching, but I am working for the Epilepsy Foundation Northwest. It has been such a joy to be able to spread seizure awareness to the Northwest, as well as offer support to people going through struggles similar to the ones I experienced.
Throughout the years and especially over the past year I have been overwhelmed by the love and support of so many people in my life. I will be forever grateful to my parents, sister, and husband for their loving support. They were right by my side every step of the way. I could list a hundred other people who offered me tremendous support, as well. I am obviously grateful for the skilled doctors, nurses and surgeons at the Mayo Clinic in Phoenix, AZ.
Personal story of hope
To all those people affected by epilepsy in some way, do not give up. We can be filled with hope because technology is advancing, medications are improving and epilepsy is finally coming out of the shadows.
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