General information links
Personal experiences
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Nonepileptic seizures
The information on this site should not be considered a substitute for face-to-face consultation with a medical professional. It is provided so that people with epilepsy, their families or caregivers, and the professionals providing treatment to them can work together to develop a treatment approach that works.
Development of content for this site is supported by your contributions, the sale of products through various affiliate programs, and Sarah's work as a writer, speaker, and in other areas listed on her services page. If the material on this site has been helpful or encouraging to you, please consider shopping using the sites linked here--and return to do your shopping anytime using these links to continue supporting this site--or making a contribution using the Amazon Honor System.
This site is about helping people to find the tools they need to succeed and build physical, emotional, mental and spiritual strength in life. Part of developing that strength involves understanding the body and any special needs you or your family member may have. Understanding what a seizure is, how the brain works, how to get the best medical treatment, and how seizures affect daily life are all part of developing strength for living with epilepsy. The information on these pages is here to help people with epilepsy, their families, and their friends gain that understanding. Medical professionals can also use information from these pages to educate patients and to improve the care provided.
If you would like to suggest additions or to report broken links please email me.
My first memory of hearing the word "seizure" is of an incident that happened when I was in the third grade. I am visually impaired, and I spent time in a resource room for instruction in braille and other skills for part of my school day. On this particular day, I left the resource room and went to my music class. When I got there, the door was closed and the room was quiet. I returned to my third grade classroom and found out that we were not having music that day because a child had had a seizure in the music room. I kept thinking about the little girl, wondering if she was alone and afraid in the music room. Someone had mentioned that she could swallow her tongue. Was she all right?
I never learned what happened to the little girl, and soon I pushed the incident to the back of my mind. A couple of years later, I attended summer camp with a girl who had epilepsy. She never had a seizure while we were at camp, and I didn't ask what epilepsy was. As far as I could tell, Rana was a normal child.
The following year, I started a new school as a sixth-grader. Several of my friends from the old resource room were there as well. Most were a couple of grades ahead of me.
One day I sat in the resource room doing some homework. Suddenly, another student ran into the room from across the hall. "Kim's dying!" she said. I was agitated, thinking that my friend had been seriously hurt somehow. The resource teacher told me that Kimwas very sick and was in the hospital. I and the other students in the room felt excluded and afraid. Kim told us the next day that she had had a seizure. Over the years, I learned that Kim's seizures were called grand mal seizures. I never saw her have one.
When I was 14 years old, I complained of disorientation and confusion. I had several EEGs to rule out seizures over the years. All were, to my knowledge, normal.
In 1989, my cousin had a partial seizure at church. We all thought she was playing a good game, making faces at people and following silly directions; but someone called an ambulance when it became apparent that she was not playing games. After she got home from the emergency room, she slept for a couple of hours and was fine. Her seizures were very well controlled as long as she took medication.
In spite of all of these experiences, I did not begin to understand epilepsy until Melanie came to live with me. She told me that she had been having seizures, and soon after she moved into my apartment I saw the first of many of them. Her seizures were not responsive to treatment, and in fact epilepsy was not even diagnosed. In an effort to understand and cope with what was happening, I began to help Melanie look for information about seizures. This marked the beginning of my own education, and my knowledge has expanded since then as I have talked with other people. Melanie is now seizure-free and does not need my help to find information anymore; but I find that the knowledge I have gained is useful in many situations because of my work with families of children with disabilities.
My own story did not end in 1986. It did not end in 1996. It did not end in 2000, as I thought it would. It is still going on. For ten years, I have managed this site strictly because of what I have known its information has meant for other people. My work is taking on a much more personal nature as I search for my own answers now. Please read my story to learn more about my perspective.
Sarah J. Blake