As women with epilepsy near midlife, they face unique but manageable issues related to changes in their bodies and lives. These can range from increased life stresses associated with personal responsibilities to decisions about whether or not to have children to the early onset of menopause.
At this stage in life, you may already know that epilepsy affects and is affected by your reproductive life. For example, sex hormones like estrogen and progesterone, which fluctuate during the menstrual cycle, can influence seizure frequency. Some women with epilepsy experience specific seizure patterns with their menstrual cycles, a condition known as catamenial epilepsy.
If you use birth control, you may also know that some antiepileptic drugs (AEDs) can interact with hormonal forms of contraception, such as birth control pills, making them less effective. Also, some hormonal forms of birth control may change some AED levels. You should talk to your health care professional about your choice of birth control and discuss your options if you are also taking AEDs. Make sure you also see a physician who fully understands your condition—a neurologist or an epileptologist. An epileptologist is a neurologist who specializes in epilepsy.
If you are considering pregnancy, it is important to know that most women with epilepsy are able to have children. However, before you try to get pregnant, discuss this decision with your neurologist and your obstetrician/gynecologist. Review the AEDs and other medications that your are taking. When possible, doctors avoid changing AEDs during pregnancy, as the change may put you at greater risk for uncontrolled seizures. However, your neurologist may need to adjust the dose of your AED during pregnancy to ensure that the amount of drug in your body stays consistent. After delivery, the usual dose may be resumed under the guidance of your physician. Because of these safeguards, most women with epilepsy have smooth pregnancies, and most babies are delivered healthy, with no increased risk of complications.
Women with epilepsy, particularly those who experience high seizure frequency, may experience menopause three to five years earlier than most women. The average age of menopause for U.S. women is 51, according to the North American Menopause Society (NAMS). The hormonal changes that occur during menopause can have a substantial effect on epilepsy, particularly for women with catamenial epilepsy.
Once menopause occurs—defined by NAMS as not having a period for one year—about 40 percent of women report their seizure disorders worsening. If this occurs, it is important to communicate with your medical team to adjust your treatment plan. Hormone replacement therapy (HRT), a common treatment for menopausal symptoms for many women, can also lead to increased seizure frequency. Discuss your options with your health care provider. If you decide to use HRT to manage menopausal symptoms, your seizure disorder should be closely monitored for negative effects such as a decrease in your AED level or an increase in seizure frequency.
In addition, the long-term use of many AEDs can have detrimental effects on bone density. This means that, as women with epilepsy get older, they are at increased risk of fractures, osteoporosis and osteomalacia (softening of the bones due to a lack of vitamin D). Risk will vary depending on which AED you take and how many years you use it, but you should have your bone density monitored regularly. Moderate weight-bearing physical exercise, as well as vitamin D and calcium supplements, can help counter the effects of such bone loss.
At this stage in life, you should pay close attention to your general health and do your best to avoid seizure triggers. Common seizure triggers like stress and lack of sleep can be set off if you are stretched thin with family and work responsibilities and are unable to take good care of yourself. Getting enough sleep and developing methods to cope with stress, like yoga or other relaxation techniques, can help minimize seizure triggers.
Drinking alcohol may worsen seizures. Some medications used for other medical conditions may interfere with AED levels, and AEDs may interfere with other medications. In addition, some medications taken for other medical reasons may actually cause seizures. You should always make sure that all of your health care providers are aware that you have epilepsy and know about all of the medications that you are taking.
To ensure that your weight and energy levels remain consistent, be sure to eat balanced meals at regular intervals and exercise regularly. Moderate physical exercise contributes to better physical health, and studies have shown that it can decrease seizure frequency and counter some of the bone loss caused by AEDs.
It is so important for you to communicate regularly and openly with your doctor during key life transitions. If you experience seizures, consider bringing a friend or family member who has witnessed the seizures to your appointments to answer any questions your health care provider may have about your seizures that you can't answer. Above all, make it a priority to take care of yourself, get enough rest and take steps to decrease stress when life becomes too overwhelming.