Thousands of sites online provide information about living with epilepsy and seizure disorders, books for families and others, etc. At Night-Light, we specialize in helping you learn skills for balancing the tasks of living with seizures and the ways that this alters life. Some of the information provided here is based on my personal experience. I live with chronic illness and understand the dilemmas it poses personally. I have also undergone testing for seizures several times; and you can read my story here. Seizure disorders have touched my life in many other ways, from the death of a dear friend in 2006 to the ongoing struggle of a friend with psychogenic nonepileptic seizures. My life has been changed by the impact of epilepsy and related disorders; and that change motivated me to include information about epilepsy and related disorders as a part of the “special needs” resources available through Night-Light.
Introduction
When the site that preceded Night-Light was launched in 1995, there were very few epilepsy sites on the web. At the time, I attempted to compile a high-quality collection of links to pages about epilepsy as a guide to the growing list of sites. After nearly twenty years, such a list has become impossible to maintain. The number of personal sites alone has spiraled out of control. New epilepsy drugs have been introduced just in the last ten years, and I can no longer keep track of who moves their site and where. What I offer you now are general observations about antiepileptic medications based on much reading and interaction with many people over the years, suggestions about video EEG testing based on my own experience after two rounds, tips on advocacy and seizure triggers, and a special section devoted to nonepileptic seizures. The nonepileptic seizures section remains unique to this site; and if you came here seeking that information, I hope that it is useful to you.
My personal introduction to epilepsy came very early in my life, when I learned that another student had a seizure in one of the classrooms at school. No one explained what a seizure was at the time. I was only eight years old, and I was deeply concerned about the child. After a while, I learned that my personal task was to go on with my work and not to judge the rightness or wrongness of how adults handled the situation. I complied, though that meant that I simply pushed my feelings to the back of my mind until later.
Later in my life, another friend was diagnosed with epilepsy–ironically, after also having a seizure at school. The situation was dramatic: a classmate ran across the hall and told my teacher that the other student was dying. This did not help my misunderstandings about epilepsy. My friend did a good job of explaining things herself a few days later, including reassuring me and a few other students that she was never in danger of dying.
Still later, when I was in high school, I began to have strange symptoms which a neurologist suspected might be some type of seizure. Results were inconclusive, and it took 25 years for me to learn that while I might indeed have had seizures as a child and adolescent, all of the symptoms were related to an unusual type of migraine.
The medication I needed was the same medication used to treat epilepsy; and I learned the same advocacy lessons. Over the years, there were periods of time when I had no medication because doctors assumed the problem was stress-related. When the right medication and dosage was found, I began to experience relief of symptoms and ability to function in complex auditory environments for the first time in nearly 30 years. Therapists were skeptical and questioned whether I really had a medical problem and really needed so much medication. The emotional cost of this journey for me time was very high.
On the long journey that I have taken, I have come to know both the epilepsy and migraine communities, to learn that I have been a part of both and a part of neither… I have lived with people who have had seizures and have come to understand the difficulties they face in daily life… I have become close to parents of young children with seizures and have come to a completely new understanding of the impact of seizures because of learning about what epilepsy does to a family. I have lost friends to the tragic impact of uncontrolled seizures when accidents happen.
If you are a person who has seizures, I hope that I am able to help you find information that is helpful to you. If you are a friend or acquaintance, please come and read boldly. Your understanding could make a difference in someone’s life.