I was 21 when I began to have petit mal seizures. They would start as “misfires” in my brain, and progress to physical shaking or tremors, but they occurred rarely and didn’t seem serious. Over several months they became more frequent and more serious, and were diagnosed as possibly epilepsy by my family physician who recommended a neurologist.
Before I had a chance to arrange an appointment with the neurologist, I had my first gran mal (tonic-clonic) seizure at home one morning. I was immediately put on Dilantin, and over the next year or so, worked with the neurologist on finding the ideal types and levels of medication. I was enrolled in law school in NYC, so I was mostly on my own. I didn’t disclose my medical condition to my roommate, my fellow students, or my girlfriends. My petit mal seizures were almost exclusively early in the day, so when I felt vulnerable to seizures I would stay in bed until the feeling passed. More than a few times I fell on my way to class, and I missed many early morning classes.
After a year or so, my medication was balanced to the point that the petit mal seizures were controlled and rare. I made some lifestyle adjustments. I completely avoided all alcohol and recreational drugs. Because excitement seemed to increase my vulnerability to seizures, I made a conscious effort to tone down my activities, especially at night, and I took prescribed Meprobamate to reduce tension and anxiety. I realized that lack of adequate sleep contributed to seizures, so I controlled my hours better than I had.
I carried my prescribed medications with me at all times, including Valium, which was fast acting. When I experienced progressively stronger petit mal seizures, I would take the Valium, and find a place to lie down for a bit and rest. At work, I complained of a headache and need to rest. It worked.
On one occasion, I found my way into the lobby of the Roosevelt Hotel, near Grand Central, and found a comfortable leather sofa to lie down on. As the petit mal seizures increased in frequency and intensity, I saw a priest walk by, and called out to him. He came over and I explained that I was likely going to have a seizure; that I didn’t need to go a hospital; that it would last a few minutes and then I would be fine; and that he shouldn’t try to interfere other than to protect me from bumping into furniture. He was still there when the gran mal seizure was over, and I thanked him profusely. A half hour later, I went on to work, and was fine.
Despite occasional morning episodes, the epilepsy had little impact on my life. I was able to function well at work, and participate actively in community politics and elected office. Because my seizures began gradually, with just minor tremors, I was always able to drive.
Eventually, my seizures subsided. In my early fifties I discontinued medication, and have had only two breakthrough episodes since, both reactions to medications
For most of that time, I kept my epilepsy private, and only disclosed it to medical personnel, and people or caregivers for people with epilepsy. I was one of the many with epilepsy that nobody knew about. It was only when a Stamford support group was formed that I felt comfortable making my medical history public, and have participated in the Stamford Support Group to help others with epilepsy.