Epilepsy and Your Hormones

Epilepsy had always been a topic that was very foreign to me—until it hit a bit close to home.

About five years ago, when she was 52, my sister found out she had epilepsy. She was at work and had just hung up the phone with me after a brief conversation. She remembers feeling a bit “funny”—and the next thing she knew, she woke up in an ambulance, confused and frightened. Lynne had suffered a “grand mal” seizure, the most common type, falling from her chair to the floor, her limbs at first stiffening, then jerking wildly.

Her doctors were not able to pinpoint the exact cause of her condition and I’m happy to report that since the initial episode, my sister has been seizure-free with the help of the two antiseizure drugs she takes each day.

Could it have been set off by stress? Perhaps. But we all have stress in our lives—yet we all don’t have epilepsy. Could it have been the change of hormone levels that occur around this time? Perhaps.

One thing that is known for sure is that epilepsy affects—and is affected by—hormones. Estrogen and progesterone, with all their fluctuations, can have a profound effect on seizures, either increasing their frequency and/or changing their patterns.

And around midlife, hormones are changing at lightning speed. That’s why it’s so important for women with epilepsy to be aware of these important facts and keep an open dialogue with their health care team even before menopause hits. Here’s what you need to know, from birth control through to menopause and beyond:

• Birth control: If you use it, be aware that some antiepileptic drugs (or AEDs) can make your birth control less effective. Uh-oh … unintended pregnancy. Conversely, some birth control pills can mess with your AED levels. Uh-oh … uncontrolled seizures.
• Pregnancy: If you have epilepsy and want children, you can have them. But it’s important to let your health providers know in advance. Your epilepsy meds may need to be adjusted to make sure you are getting consistent levels.
• Menopause: It may come three to five years earlier for women who experience frequent seizures. Menopause may also change the frequency of your seizures; about 40 percent of women experience their seizures worsening. Hormone replacement therapy (HRT): HRT can also increase seizure frequency. Is it worth it? Discuss your options with your health care provider.
• Bone density: Your bone density can be negatively affected by long-term use of some AEDs, potentially increasing your risk of fractures, osteoporosis and osteomalacia (a softening of the bones due to a lack of Vitamin D). It’s important for all women to have bone density monitored regularly and practice other bone- strengthening measures, like weight-bearing exercises and intake of calcium and Vitamin D—and it’s even more important for you.
• Sleep and stress: Too little sleep and too much stress can trigger a seizure. Make sure you get enough—and not too much—of each.
• Alcohol: Drinking alcohol may worsen seizures.
• Other medications: Taking other meds (as in the case of birth control, mentioned above) can interfere with the levels of AEDs in your body. The same goes for taking AEDs: They can alter the levels of other medications you take for other conditions.
• Exercise: Use it! It can help counteract the bone loss that may come with medication. It can also help reduce stress, keep your weight balanced and keep your energy levels at their peak.