I had my first seizure—a grand mal—when I was five years old. When my parents found me, my lips were blue, my eyes were rolled back, and my entire body was shaking. I was diagnosed with encephalitis. The virus had traveled to my brain, causing me to go into a four-day coma. The doctors thought that when I came out of the coma I would probably have some degree of brain damage.
My parents sat by my bedside and prayed. On the fourth day, my father looked up to find my eyes wide open. The first thing out of my mouth was “Can I have McDonald's fries?” I sustained no brain damage, but the encephalitis left scar tissue in my brain, resulting in epilepsy.
My seizures came only occasionally as a child, until my hormones started to change.
I learned from my doctor—Orrin Devinsky, M.D. professor of neurology, neurosurgery, and psychiatry at New York University School of Medicine and director of the NYU/Mount Sinai Comprehensive Epilepsy Center—that the reason for increased seizures around the time of ovulation and the premenstrual phase is thought to be primarily an increase in the ratio of estrogen to progesterone. Hormones don't cause seizures, but they can influence when seizures occur.
According to Dr. Devinsky, “When seizures occur exclusively or predominantly around the time of menses or ovulation (catamenial epilepsy), which they do for many women, it is especially important to maintain good sleep and avoid alcohol—certainly less than two beverages per day—during those times. For some women, a temporary increase in medication can be helpful if their menstrual cycle is regular. The use of hormonal therapy such as progesterone to prevent seizures remains more of a potential than a proven strategy, and we lack data to show that progesterone is definitely effective or safe as a long-term treatment for epilepsy around the time of menses or ovulation. For women with catamenial epilepsy, even removal of the ovaries and womb does not stop seizures, so effective antiepileptic drugs and a healthy lifestyle remain our best approach to help control seizures.”
Another thing I learned over the years is that our doctors can only do so much. If we don't help ourselves, then we can't expect to get better. Here are tips that I have developed for managing epilepsy.
1. Track Your Seizures: I use a seizure diary to track my seizures on an ongoing basis. For every seizure I experience, I write down the type of seizure and when it occurred. This information can help give your doctor a better idea of where the seizures are coming from. You can find a good seizure diary at epilepsy.com/seizurediary.
2. Review Your Seizure Diary: I review my seizure diary each month to find patterns and ask myself questions. Did my seizures mostly happen in the morning, in the afternoon, or at night? Was I doing anything different during those times? Were most of the seizures focal, partial, or grand mal? Did my body swing to a certain side?
3. Track Menstruation and Ovulation: I keep track of my menstruation and ovulation on a wall calendar near my desk. I usually menstruate every 28 days, so I highlight the 28th day and circle four days before and four days after that day. I do the same for ovulation. During this time I'm careful where I go and what I do, because my chances of having a seizure are higher.
4. Maintain a Healthy Diet: Since I have been watching what I eat and exercising regularly, I have lost weight and my seizures have decreased quite a bit. According to Dr Devinsky, “evidence suggests that regular exercise and stress reduction can improve seizure control for some people.”
5. Take Your Medication: This is the most important piece of advice I can give. Taking your medication on time is very important, especially during menstruation and ovulation.
6. Lower Stress: For me, stress can bring on seizures, especially during menstruation and ovulation. Therefore, I try not to let minor problems, past mistakes, or worries about the future upset me too much. I try to enjoy the moment and focus on the present.
7. Set Aside “Me” Time: Take some time to relax: Take a bubble bath, meditate, or read a book. A little quality time can help you wind down and remember to do the things that keep you healthy. You'd be surprised how many things can affect epilepsy—negatively and positively—so take some time to recharge.
8. Keep a Positive Attitude: Yes, you have epilepsy. But has the disorder changed you for the better in any ways? Have you become stronger as a person? Would you be as caring to others with conditions and disabilities? I think my disorder has made me a better person.
Stacey Chillemi is the author of Epilepsy: You're Not Alone (Lulu.com, 2006).