You could say that epilepsy doesn't discriminate. It strikes men and women at about the same rate. Men are slightly more likely to develop it than women. But that doesn't mean that it always affects men and women in the same way. Women definitely have special issues they need to understand and prepare for.
About 1 million women and girls are living with epilepsy and other seizure disorders today. If you're one of them, you know that there are things that men and boys with epilepsy don't have to worry about. For example, you might notice that you have more seizures around the time of your menstrual cycle and want to know why. You may be wondering whether it's safe to get pregnant. You may question if it's safe to take epilepsy drugs during pregnancy.
About 500,000 women of child-bearing age in the U.S. have a seizure disorder. Not only do they have to cope with seizures, they must deal with the impact the disorder can have on their reproductive health. Epilepsy and seizure medications may affect contraception, pregnancy, hormone levels, and the female reproductive cycle.
Epilepsy and Birth Control
Women with epilepsy who are sexually active should talk with their doctors about contraception and pregnancy. Many seizure drugs can keep birth control pills from working like they should, which can lead to an unplanned pregnancy. Other methods of birth control may be more effective in certain cases. Don't wait until it's too late to discuss birth control with your doctor.
All women of child-bearing age should also take a multivitamin with folic acid daily to help prevent certain birth defects. Women who are taking seizure medications should be especially careful about taking a multivitamin and extra folic acid (check with your doctor about the exact dose), because some epilepsy medications deplete the body of important vitamins, particularly folic acid.
Epilepsy and Pregnancy
If you have epilepsy and are thinking about becoming pregnant, talk with your epilepsy doctor ahead of time so they can optimize medications and monitor levels. Not all medications are safe during pregnancy and some are safer than others. It is also safer to take medication and control seizures than to have a seizure while pregnant.
Women with seizures can have healthy children if they get good prenatal care. Many people with epilepsy take multiple medications in high doses that may lead to unnecessary drug exposure to unborn babies. Some medications for epilepsy are strongly linked to birth defects. In some cases, medications may be reduced or changed before pregnancy, especially if seizures are under control.
If you get pregnant unexpectedly, don’t stop taking your seizure medication until you talk with your doctors. Stopping often leads to more frequent seizures, which can also harm the baby.
Seizures During Pregnancy
The frequency of seizures usually doesn’t change much during pregnancy. But some women have seizures more frequently, and others have fewer seizures. Blood levels should be checked often. Medication blood levels slowly fall during pregnancy and, if not changed, can reach their lowest level around the time of delivery, resulting in breakthrough seizures. Tell your doctor if you have any seizure during pregnancy.
The good news is that if you’ve been seizure-free for at least 9 months, you are more likely to stay that way during your pregnancy.
Epilepsy and Labor and Delivery
Most pregnant women with epilepsy have normal vaginal deliveries. Cesarean sections (C-sections), in which the baby is taken out through a cut in the abdomen, are needed in some cases. When seizures happen during labor or delivery, C-sections are usually done right away.
Breastfeeding With Epilepsy
Women taking seizure drugs may breastfeed their infants. But some of these drugs can make babies very sleepy and irritable after feedings. If this happens, stop breastfeeding until you check with your doctor.
Epilepsy Drugs and Birth Defects
Some epilepsy drugs, especially valproate (Depakote), can raise the risk of birth defects and have been linked to lower IQ in children. Carbamazepine (Tegretol) may raise the risk of spina bifida (a major birth defect of the baby’s spine) and cleft palate (a birth defect of the mouth).
On the other hand, uncontrolled seizures can pose serious problems to unborn babies. Severe birth defects are rare in infants of women who get regular prenatal care and whose seizures are managed with medication carefully. Women should never stop seizure medications without talking to their doctors.
Epilepsy and Hormones
Hormones affect the function of the brain throughout life. Many women have an increase in seizure frequency just before or during their menstrual periods. This is probably due to normal changes in estrogen and progesterone levels during the reproductive cycle. Many women with epilepsy have uneven menstrual cycles, including missed periods. If you regularly have missed periods, talk to your doctor.
Doctors don't have all the answers for women with epilepsy. But a lot more research is being done and they are learning more every day. There are now more treatment options than ever.
Here are some of the things you might want to ask your doctor about to understand how your epilepsy can affect your life and how to manage it:
- What birth control should I use if I have seizures?
- Which medication is safest to take during pregnancy?
- Are there extra supplements I can take?
- Can epilepsy affect my fertility?
- Is it safe for me to get pregnant?
- Are my children at risk for developing epilepsy?
- What should I do to prepare for being a parent?
- How do my periods and hormones affect my epilepsy?
- What will happen when I go through menopause?
It's important to know that epilepsy can usually be controlled. It typically doesn't get worse with time. Approximately 70% of people with epilepsy can be significantly helped by modern therapies, and some may go months or years between seizures. However, 30% of new patients fail to gain control of seizures despite following their prescribed treatments. But, with the help of a knowledgeable doctor, women today can manage their epilepsy and have active, healthy lives. And seizures may decrease as women get older.