Epilepsy Foundation of Georgia

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Women & Epilepsy Initiative

This page is intended to provide the basic information about epilepsy and seizure disorders to the general public. It is not intended to, nor does it, constitute medical advice, and readers are warned against changing medical schedules without first consulting a physician.

The Women & Epilepsy Initiative is a campaign to bring hope and help to women with epilepsy. The project is divided into initiatives to break down community and institutional barriers.

The community initiative will provide the information and support that women with epilepsy need to work more effectively with their health care providers to manage the effects of epilepsy in their daily lives. Enhanced awareness of epilepsy and its impact on women will improve public understanding and help alleviate the psychological and social consequences that women with epilepsy face.

As always, we would welcome any questions you might have.  In Atlanta call (678) 306-1210 or statewide call toll-free (800) 527-7105 or contact us by email at:info@epilepsyga.org.

Psychosocial Issues

What do you mean by "psychosocial"? Do people with epilepsy have psychological problems?

The term "psychosocial" includes how you feel about yourself, how you deal with the chronic disorder of epilepsy, and issues involving your relationships with other people, such as family, friends, or co-workers. It does not automatically mean problems although anyone can have emotional difficulties with self-esteem or relationships. People with epilepsy may be embarrassed or fearful about their seizures and they may have to contend with the ignorance and fear of other people. Some people work through these issues on their own, and others may need some help from a physician, a nurse, or a professional counselor to deal with them effectively.

When should I tell people about my seizures?

It's your decision when, or if, you tell people about your epilepsy. It is probably difficult to keep this a secret from close friends or people you spend a lot of time with. People can be frightened of situations they don't understand or anticipate. Most good friends will be supportive and understanding about your seizures and they may be interested in learning more about epilepsy. However, you may choose not to confide in casual acquaintances, just as you would not share other personal information with them.

How do I tell other people about my epilepsy?

Have a positive attitude about yourself -- epilepsy is only a part of who you are, and nothing to be ashamed of. Whenever possible, choose a comfortable place and enough time to keep you from feeling anxious or rushed when you talk about your seizures. It may help to have written material available about epilepsy to share.

I'm really nervous about telling my boyfriend about my seizures. I am afraid he will be scared off.

It may be especially important to tell your boyfriend about your seizure disorder so there won't be any unexpected surprises. Keep a positive attitude about yourself and epilepsy, and he probably will, too. If you need moral support, ask a family member or friend who knows about your seizures, or your physician, to help explain the facts to your boyfriend. Remember that intimate relationships are complicated and may have problems for many reasons. Women without epilepsy struggle with these issues, too.

People say I have mood swings. Can my personality be affected by epilepsy or my medications?

That is a complex question. Mood and personality are affected by many factors. Certain kinds of seizure disorders (those that originate in the temporal lobe of the brain, for instance) appear to affect mood and behavior during an actual seizure episode, and even an aura may change your behavior patterns. But seizures (and auras) are intermittent events and it is not clear how epilepsy affects general personality traits. Some physicians used to refer to the "epileptic personality," implying that all people with seizures shared certain behavioral characteristics. We now recognize that people with epilepsy have a variety of personality traits, positive and negative, just as people without epilepsy do.

The intermittent and often unpredictable occurrence of seizures can make you feel anxious or embarrassed, and cause some people with epilepsy to be reluctant to socialize normally. They may withdraw and feel angry or depressed. You may have extra stresses connected with work, and financial hardships secondary to career choices or the costs associated with your seizure disorder. Any of these factors can make people seem moody. Some of these feelings may be a normal reaction to the initial diagnosis of epilepsy or to the everyday events in your life. If they persist and significantly interfere with your life, talk with your physician or nurse. They may refer you to a professional counselor (social worker, psychologist or psychiatrist) to help you address these issues.

Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations, especially as it relates to their menstrual cycle. Many women also notice mood swings at specific times in their menstrual cycle. It may be helpful to keep a calendar of your menstrual cycle and any mood changes along with your seizure record to share with your doctor or nurse.

In addition, seizure medications may have side effects that result in mood changes. This seems more frequent with phenobarbital (Luminal) or primidone (Mysoline), but any seizure medication can make some people feel depressed or irritable. If the dose of medication is not well tolerated, resulting in overmedication, a person's ability to think clearly may be affected. If you think your medication is having unpleasant side effects, it is important to share this information with your nurse or doctor.

I feel like epilepsy keeps me from leading a normal life.

It's understandable that you feel that way. Epilepsy does interfere with certain aspects of life for most people who have seizures. Taking medication daily, having regular blood tests, or keeping seizure records is time consuming and a frequent reminder of a chronic disorder. For some people, there are more difficult restrictions, such as inability to drive or make certain career choices.

Seizures are unpredictable and may limit some of your independent activities. Other family members and friends may be concerned and overprotective and, as a result, you may feel dependent. Realistically, some people with epilepsy may have to depend on others to help with certain tasks of daily living.

Although common sense precautions may be necessary, it helps to focus on your abilities, rather than defining yourself by your restrictions. Think of creative ways to solve the problems in your life, such as sharing rides with friends, or learning about public transportation options if you can't drive. Shopping by phone or with a computer may increase your options for independence and control.

Talk with your family and friends about these issues and your feelings. Insist that you need to be involved in the plans and decisions that affect your life. And don't hesitate to ask for help if you need it, including professional counseling.

Can I have a normal sexual relationship even though I have seizures? Can I get married and have children?

Yes, you can. Sexual relationships are a normal part of healthy living, and people with seizures fall in love and marry just like anyone else. Women with epilepsy get pregnant and most of them have normal, healthy babies. You may experience some specific problems associated with seizure disorders that can interfere with sexual expression and there are some concerns related to seizure control, certain medications and other significant issues that are important to discuss with your doctor before you become pregnant.

My doctor thinks I am overly concerned about my seizures. I just get the brush-off.

It is normal to be concerned about having epilepsy. Prepare carefully for your doctor appointments and be clear about what issues you would like to discuss. Keep written records of your seizures, response to medication, concerns about side effects, and any other questions you have. Take this information with you to appointments to share with your doctor or nurse. It may help to ask for a separate time just to discuss these issues if your physician seems rushed at a regular appointment. Take a friend or family member with you if they can help you share information about your seizures that might help the doctor understand your concerns more fully. You can contact the Foundation for information sheets on a variety of subjects written for health care providers.

You and your doctor are partners in your care. Your physician has the medical knowledge, but you are the expert on yourself. If you are not satisfied with your doctor's response to your concerns, discuss this with your doctor, and if the relationship does not change, consider choosing another physician.

My doctor told me that because I need to take antiepileptic medication, I should never get pregnant. Now that I am pregnant he recommends an abortion, but I want my baby. Am I wrong to think that my baby will be okay?

For women who have epilepsy, the risk of having a baby with a birth defect is double the risk for women in the general population. Any woman, whether she has epilepsy or not, has a two to three percent chance of having a baby with a birth defect. For women with epilepsy, the risk is four to eight percent. Even so, mothers with seizures have a better than 90 percent chance of having a normal, healthy baby.

The actual cause of the increased risk of malformations has not been determined, but there are three strong possibilities:

  • The birth defects are genetically related to whatever causes the epilepsy.
  • The birth defects are related to antiepileptic medications needed to control seizures.
  • The birth defects occur because the baby may have a genetic susceptibility to possible harmful effects of medications.

Whatever the cause of the malformations, they do not occur often enough to support avoiding or terminating a pregnancy. However, if an eight percent risk of having a child with a malformation is unacceptable to you, it is important that you make the decision that's best for you.

Stillbirths or miscarriages are also more common for women who have epilepsy, occurring in 1.7 percent of pregnancies, which is about three times the amount in the general population.

There is also a small increase in mortality rates during the first year of life for children of mothers with epilepsy. That risk is only about 0.6 percent, but is higher if the mother's seizures are not well controlled.

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Special Concerns about Seizure Medications

How do I know if I am taking the right medication for my seizures?

The choice of antiepileptic medication is based on your seizure type, the pattern on your EEG, how well the medicine controls your seizures, and how you tolerate the medication. Some types of epilepsy respond better to certain medications than others. Seizure patterns can change and medication may need to be altered. Choosing the appropriate medication is very individual. An antiepileptic drug (AED) may work well for one person, and not for another. You and your doctor can work together to find the best medication for you.

I've read about some new medications. Should I try one of those?

That depends on how well your seizures are controlled and how you feel on your current medicine. If you want better seizure control than you now have, or feel you are having unpleasant side effects from the medication, talk to your physician about other options. Sometimes, there is no perfect solution and you will have to choose between some side effects and total seizure control, or no side effects and some seizures. Only you, with your doctor's advice, can decide what is the best choice for you.

Some of the newer medications seem to control seizures well with minimal side effects. If you are not happy with your current situation, it makes sense to talk to your doctor about trying something else. However, any change in medication may put you at risk for break-through seizures and require some temporary limitations in lifestyle (not driving a car, for instance) until the effects of the medication are clear. Again, you will need to weigh the benefits versus possible risk and inconvenience.

I tried three different medications before I found one that controlled my seizures. Why didn't my doctor try that one first?

There is no magic way to know which medication will work for a specific person. Although it feels frustrating to be switched from one medication to another, it is a good medical decision to keep trying to find the AED that best controls seizures with the least side effects. Keep in close contact with your nurse and doctor to be sure they understand your response to medication.

How do I know if I'm having side effects?

That's a good question. All medications can cause side effects. However, most people tolerate their medications very well. The best way to tell if you are having side effects is to notice any symptoms you feel when you first take a medication or when the dose has changed. Some side effects of seizure medication are related to your dose of medication. If you are taking more medication than you can tolerate, you may feel groggy, or dizzy or sick to your stomach. You may have poor balance or see double at times. The dose at which these symptoms occur varies and some people can tolerate a much higher dose than others.

What other kinds of side effects might I have?In addition to side effects caused by the dose of medication, there may be symptoms that occur in some, but not all, people who take the drug. This is called an idiosyncratic side effect. Some people notice weight gain, unrelated to calories eaten, on certain seizure medications. Valproate (Depakote) may be the most common drug to have this side effect, but it has been noted with carbamazepine (Tegretol, Carbatrol) and gabapentin (Neurontin) as well. Felbamate (Felbatol), topiramate (Topamax), and zonisamide (Zonegran) can cause weight loss.

Phenytoin (Dilantin) may cause undesirable cosmetic side effects, such as excessive hair growth (including facial hair) and coarsening of the features. Again, this does not happen to everyone, and is more likely to occur after prolonged use.

Mood changes seem to be more common with phenobarbital (Luminal) or primidone (Mysoline), but any seizure medication can make some people feel depressed or irritable. Obviously, these symptoms may be caused by something other than epilepsy medicine, such as illness or stress. Give your doctor as much information as possible to help determine the underlying cause.

Your ability to think clearly or to concentrate can be affected by several AEDs, including phenytoin (Dilantin), carbamazepine (Tegretol, Carbatrol), topiramate (Topamax), phenobarbital (Luminal), and primidone (Mysoline).

Some AEDs may cause bone loss and increase the risk for osteoporosis. It is important to make certain that you are receiving adequate calcium (1200 mg/day if you are menstruating and 1500 mg/day if you are post-menopausal).

Other AEDs are associated with changes in the menstrual cycle. If you notice a change in the length or regularity of your periods, let your health care provider know.

There are some rare, dangerous side effects (including liver failure and blood disorders) that may initially show up only in a blood test. This is one reason that your doctor may order more frequent lab work when you first start a new medication. Most of these serious side effects show up in the first few months you take a medicine, are not dose-related and are unlikely to occur later.

What does it mean when my doctor orders a "blood level" on my seizure medication?

When you take a medication for epilepsy, only a portion of it enters your bloodstream and goes to the brain cells for seizure control. Some of it is metabolized in the liver to a substance that is not effective against seizures; some of it may be eliminated from the body by the kidneys or the intestine. The amount in the bloodstream, the "blood level," is measured by a laboratory test to determine how much medication is available to control seizures. This gives your doctor a practical range to make judgments about your medication dose. This information together with information you share about seizure control and possible side effects helps determine the dose of medicine you should be taking.

I'm taking three different anticonvulsants. Isn't this worse than taking just one if I plan to get pregnant?

Pregnant women who take more than one antiepileptic drug have a greater chance of having a baby with a birth defect. We don't know if this is because of the multiple drugs or because of the types of epilepsy that require the multiple drugs.

It is certainly possible that women who require multiple drugs to control their seizures may have a more severe form of epilepsy. This type of epilepsy might prove to be associated with the development of congenital malformations in their children.

The preferred treatment for all patients with epilepsy is to take the least number of different drugs possible and still control the seizures. Because we do not know for certain what might cause a birth defect, this treatment guideline seems especially appropriate for a woman who has epilepsy and wants to become pregnant.

Your neurologist will need to determine if reducing your number of medications is an option open to you.

I take birth control pills. Do they interact with my seizure medication?

There may be complex interactions between the hormones in birth control pills and some of the medications used to control seizures. Some of these medications increase the breakdown of contraceptive hormones in the body, making them less effective in preventing pregnancy. It is very important that all your health care providers be aware of all the medicine you take.

I am thinking of getting pregnant. Will there be any problems with my seizure medications?

It's a good idea to think about these complex issues prior to getting pregnant. Vitamins with a folic acid supplement are an important factor in reducing the risk of certain kinds of birth defects, and you need to take folic acid before you become pregnant. Uncontrolled seizures can have risks for both you and your unborn child, and multiple seizure drugs at higher doses are statistically related to an increased risk for some types of birth defects. Whenever possible, a single AED at the lowest dose that provides good seizure control should be used.

But it's important to remember that your chances of having a normal, healthy child are excellent -- greater than 90%. Talk through any potential problems now with your neurologist and your gynecologist/obstetrician so you can make reasonable decisions about this important part of your life.

Will the medication that I'm taking affect my baby when it is born?

Some antiepileptic medications can affect newborn babies. When a mother has been taking antiepileptic medication during pregnancy, there is a possibility that her baby will appear sedated during the first few hours or days after birth. The medication most commonly linked to this effect is phenobarbital.

After the sedation wears off, some babies will develop withdrawal symptoms. These can consist of hyper-irritability, tremor, vomiting, poor sucking, fast breathing, and sleep disturbances. One or more of these symptoms may last from a few days to about three months. Although these problems can be very frustrating to parents, they do improve and are seldom serious unless they interfere with the baby's ability to get enough to eat. If your baby fails to gain weight properly, an evaluation by your pediatrician will be needed.

Babies born to mothers who take antiepileptic medication also have a small risk of developing a serious hemorrhagic (bleeding) disorder within the first 24 hours after birth. Some experts maintain that this disorder can be prevented if the mother takes 10 mg. per day of Vitamin K1 (Mephyton tablets) during the last two to four weeks of pregnancy. Your obstetrician can prescribe Vitamin K1 for you.

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Hormones and Epilepsy

What are hormones?

Hormones are chemical substances formed in organs and glands that travel through the body via the bloodstream. They control many biologic processes such as muscle growth, heart rate, hunger and menstrual cycle. Steroid hormones include the three major sex hormone groups: estrogens, androgens, and progestogens. All three are present in both men and women, but in different amounts.

What do the sex hormones do?

Sex hormones have several functions. Primarily, they control and maintain our reproductive systems. They also have an influence on muscle mass, bone strength, emotions, and behavior. Sex hormones begin to influence brain function before birth, as early as a month or two after conception.

Is there a connection between seizures and hormones?

Yes, although we do not understand it very well. We know that the female hormones, estrogen and progesterone, act on certain brain cells, including those in the temporal lobe, a part of the brain where partial seizures often begin. Estrogen excites these brain cells and can make seizures more likely to happen. In contrast, natural progesterone can inhibit or prevent seizures in some women.

Are all seizures caused by hormone changes?

Hormones generally do not cause seizures but can influence their occurrence. Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations. For example, puberty is a time when hormones are stimulating body changes. It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time. Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods.

Why do I have seizures more often around the time of my menstrual period?

This is a condition called "catamenial epilepsy," and describes a tendency for increased seizures related to the menstrual cycle. In some women, seizures occur most frequently just before menstruation, during the first few days of menstruation and at mid-cycle, during ovulation. The causes of catamenial epilepsy are not understood very well. The balance between the two female sex hormones, estrogen and progesterone, may be disturbed, or you may not be producing enough progesterone during the second half of your menstrual cycle. It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.

Why do women with epilepsy often have more reproductive disorders than women without seizures?

Women with seizures that start in the temporal lobes of the brain seem more likely to have reproductive disorders such as polycystic ovaries, early menopause, and irregular (or no) ovulation, than women in the general population. The temporal lobes are closely connected to, and communicate with, areas of the brain that regulate hormones (hypothalamus and pituitary gland.) Seizures in these areas may alter the normal production of hormones. Certain epilepsy medications seem to interfere with hormone regulation.

Do men have hormone-sensitive seizures, too?

Hormonal changes in men are less obvious than in women because men do not have a monthly cycle. However, in men, hormones (testosterone and breakdown products) also influence brain function and may have an impact on seizures. More research is needed on hormones, seizures and sexual function in men with epilepsy -- as it is needed in women with epilepsy.

Why is it important to find out if hormone changes are involved in my seizures?

For both women and men, identifying hormonal influences on seizure patterns may lead to a better understanding of treatment options for seizure control. Women should keep a calendar of their menstrual cycles and of days they have seizures. It is important to keep track of other factors that may affect the menstrual cycle or seizure patterns, such as missed medication, loss of sleep, unusual fatigue, intense physical training, stress or an illness. Some women may find it helpful to keep track of the lowest body temperature of the day (taken each morning before getting out of bed, and before eating the first meal of the day). This helps to find out if you are ovulating regularly. Be sure to share these records with your doctor or the nurse who is helping you manage your seizures.

How do I find out if I have hormone-related problems?

If you suspect that hormones play a role in your seizures, talk to your physician or the nurse who helps monitor your seizures. Blood tests of certain hormone levels and of your seizure medication may provide helpful information. Sometimes additional tests, such as a pelvic ultrasound, may be recommended to rule out other causes for menstrual irregularities.

I think my seizures have something to do with hormones. Should I see a specialist?

Most people who have well-controlled seizures are treated by a primary care doctor. But women who have special concerns about seizures and hormones need referral to a neurologist. A neurologist who specializes in seizures is called an epileptologist. A neuroendocrine specialist is a neurologist with training in hormone disorders and their effects on brain function. These physicians are usually found at hospitals or health care centers with programs devoted to epilepsy treatment, often called Comprehensive Epilepsy Centers.

Will my insurance cover the costs of seeing a specialist?

Talk to your primary care doctor first about your concerns and referral sources covered by your health insurance.

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Special Concerns for Teenage Girls

The nurse who helps me with my epilepsy medication told me recently I was "going into puberty" and might "outgrow my dose." What does that mean?

Puberty is the time when your body changes and you grow from a child into an adult. You get taller and weigh more, and you start to grow breasts and body hair. Some of these physical changes happen quickly and the dose of seizure medicine that worked before is not enough for your new body size. Your doctor may order more frequent lab tests to check the level of medication in your blood, to be sure that you are taking enough medicine to keep your seizures controlled.

I've had "petit mal" seizures since I was in first grade. My doctor said I would probably outgrow them when I was a teenager. Is that true?

There are certain kinds of seizures that are almost always outgrown in teenage years. Petit mal seizures (also known as "childhood absence") are an example. You and your doctor will decide with your parents when it is safe to stop your medication. This doesn't always work and you may still have seizures. Then you need to keep taking your medicine.

My friend takes a different medication for her seizures. Which is the best one?

There are many good medications for seizures, and some work for one type of seizure better than they do for other types of seizures. You and your doctor choose your medication by the pattern of your EEG and how the medicine affects you. You need to let him or her know if you are still having seizures or if you feel bad or funny when you take your medicine.

I've started to have monthly periods and I've heard this will make my seizures worse. Is that true?

There's no way to tell if your seizures will change when you start your period. Usually, there is no change in seizure pattern. However, some girls and women have more seizures just before or at the beginning of their periods. Although we don't completely understand the cause, it seems to be related to hormonal changes. If you notice that your seizures seem worse around the time of your periods, talk to your doctor. It is a good idea to keep a calendar and mark in it when you get your period and when you have your seizures. You should bring this with you when you go to your doctor's visit and show it to the doctor or nurse.

I'm scared my friends will find out about my seizures, and will make fun of me. What should I do?

It's up to you who you tell about your epilepsy, but it is sometimes hard to keep secrets from your best friends or people you spend a lot of time with. Most of your friends will be all right with it. It may help to talk this over with your parents or another adult you trust and get their help in making the decision.

I have a boyfriend. What if I have a seizure when we are together?

It's normal for you to worry about this. He may be one of the people you tell about your seizure disorder, so there won't be any unexpected surprises. If your boyfriend knows what to expect, he will be able to help and support you if a seizure does occur. Perhaps one of your parents, or a nurse or a doctor can help you explain the facts about seizures to your friends.

My parents worry about me and won't let me do stuff with my friends. How can I get them to let me be more independent?

Your parents love you and just want to keep you from getting hurt. Unfortunately, sometimes it feels like they treat you like a child. It may be helpful to have your nurse or doctor talk to them about letting you do things. You might have to take some extra precautions. Think through the activities you want to do, and be sure you would not be badly hurt if you had a seizure. For example, if you go swimming or diving, you'll want to make sure that someone is with you who knows what to do if you have a seizure. If you are going skiing, you probably want to ride the chair lift with someone who knows what to do. Practice your negotiating skills to find a plan that is comfortable for both you and your parents.

My parents are always lecturing me about drinking and doing drugs. Everybody else does it. Why can't I?

Drinking alcohol when you are underage, or using illegal drugs at any age, is not good for anyone. If you have epilepsy, these alcohol and drugs may increase the risk of your having seizures. Or they may cause you to have bad effects from your medication. It's your decision to make, but weigh the risks against doing these things just because everyone else does.

Can I get a driver's license if I have seizures?

That depends on several things. The laws are different from state to state, but in most places if your seizures are well controlled and you are dependable about taking your medication, you can drive a car. Some states make you wait six months to a year after having a seizure before you can drive. Driving is a serious privilege, involving your safety and that of other people. If seizures keep you from getting a driver's license, be creative about finding other ways of getting around, like public transportation or sharing rides with friends.

My boyfriend and I are really in love. Can we get married if I have epilepsy?

Yes. Most people with seizures fall in love and marry just like anyone else. If you are serious about your relationship there are important issues for all young couples to consider. You need to understand the facts about your bodies and your sexuality. Get information about sexually transmitted diseases, and if you are sexually active make sure you understand birth control options and safe sex.

Will I be able to have children?

Yes. Women with epilepsy get pregnant and most of them have normal, healthy babies. There are concerns related to seizures, certain medications and a specific vitamin supplement called folic acid that are important to discuss with your doctor before you become pregnant. (If you are not taking folic acid, you should ask your doctor or nurse about it.) Having children is an important decision for any couple, and it requires planning and commitment. There may be some special adjustments if you have epilepsy, but there is no reason you can't be a successful parent.

I hate my seizures and having to take medication. Sometimes, I go to my room and just explode.

Everyone with epilepsy feels angry and sad at times. Those feelings are normal. If you start to feel hopeless or overwhelmed, talk to your parents or some adult you trust, and get some help. Some people may need counseling to talk about their feelings, and learn ways to deal with stress. Don't ever be ashamed to ask for help. You're worth it. You can also talk to others who deal with some of the same things you do if you log onto the Epilepsy Foundation's Teen Chat Interest Group.

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Epilepsy and Sexual Relations

What makes a person want to have sex?

Sexual relationships are a normal part of healthy living. Three things lead to sexual activity: first there is desire -- wanting to have sex with a partner. When that feeling is strong, there is arousal -- the physical feeling that you "need" to have sex. Finally, there is orgasm -- the height of physical pleasure during intercourse. These processes depend on many reflexes that are coordinated by the nervous system, and involve hormones, nerves, and blood vessels.

How often should a person have sex?

The desire for sex varies widely in the general population and in people with epilepsy. A person who does not think about sex or want to have sex one to three times a month probably has unusually low sexual desire. But remember, this is a very personal matter, and if you are satisfied with your level of sexual activity, you have no problem.

Could my epilepsy cause problems when I'm sexually active?

We do not yet fully understand all the complex causes for sexual problems, especially how they may be related to epilepsy. For example, some people have a low level of sexual desire; others have difficulty becoming sexually aroused; or intercourse can be painful for some women. It is not unusual for people to have problems with sexual performance at times, and people with epilepsy are no exception. However, people with complex partial seizures, particularly when the seizures start in the temporal lobe, seem to have more sexual problems, such as the ones listed earlier.

I would like to have a close relationship, but I'm afraid to have sex. Is that unusual?

No. Low self-esteem or cosmetic effects from medication may make women and men with epilepsy feel sexually unattractive. Those feelings can lead to a lack of sexual desire and arousal. Acceptance of yourself and your epilepsy are important in developing an intimate relationship with another person. Perhaps you are afraid you might have a seizure during intercourse. Seizures often involve the same areas of the brain that are important to maintaining healthy sexual function, and some of the sensations felt during lovemaking can be similar to those experienced during auras or simple partial seizures.

I don't like sex because it hurts. What can I do?

Many women with epilepsy say that intercourse is painful for them. This is especially common in people who have temporal lobe epilepsy. Painful intercourse can be caused by dryness of the vagina or painful vaginal spasms during intercourse. Ask your physician about creams or gels for lubricating the vagina to ease the discomfort of intercourse. Gynecologists can do gradual dilations of the vaginal opening for women who have severe problems with pain and spasm.

Do men with epilepsy have sexual problems too?

Yes, almost a third of all men with epilepsy have difficulty achieving and maintaining an erection. Specialists called urologists offer help to men with sexual problems, including some medications that ease problems with erection.

Can seizures have anything to do with how I feel about sex?

Yes, they may. When seizures are under control, people seem to have improved sexual desire and performance. Any of the antiepileptic drugs (AEDs) can possibly cause sexual difficulties. However, this reaction to one medication does not mean you will have the same experience with another. Talk with your doctor about trying another anticonvulsant medication for your seizures if you suspect this is a part of your sexual problem.

Hormones play an important role in sexual function and some people with epilepsy have alterations in normal hormone levels. Both seizures and epilepsy medicine can interfere with the way your body uses hormones, resulting in sexual problems. You may need referral to an endocrine specialist to sort out the complex interactions between hormones, seizures, and medications.

I am embarrassed to talk to my doctor about sex.

It may be difficult, but it is very important to talk to your doctor about sexual difficulties. In addition to epilepsy, there are other causes for sexual dysfunction that can be diagnosed and treated (medical conditions such as diabetes, thyroid disorders, or high blood pressure). Your physician may ask questions about religious beliefs, uncomfortable experiences in your past related to sex, any stress or recent illness, and details of your sexual relationships. These are private, personal issues, but it is important to share the information openly, to help your doctor understand your problems and provide the appropriate help in solving them.

I've heard about sex therapy. Would that help?

Talking about your sexual difficulties with a trained therapist can be very helpful. Sometimes, anxiety or depression is causing problems with sex. It is often important to bring your partner for couples therapy. Some people need information about sexual feelings and activities and suggestions for making their relationship more pleasurable.

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Birth Control for Women with Epilepsy

More than one million women and girls in the United States are living with seizure disorders. They face many unique challenges, from changes during the monthly cycle which may trigger seizures to concerns regarding pregnancy. Social factors leave them vulnerable to discrimination and abuse. Yet their plight and the manner in which they are affected has been largely ignored. As an important part of the Epilepsy Foundation's role in advocating for all people with epilepsy, we are committed to addressing the unique health concerns of women with epilepsy.

Many women have questions and concerns about using birth control medications. This information sheet explores the complex interactions between hormonal birth control and some of the medications used to control seizures. It will also answer other common questions related to birth control in women with epilepsy. How does one know which is the best method of birth control? Are there special concerns about "the pill" for women with epilepsy? Are there problems with other forms of hormonal birth control? What are warning signals that contraception is not working? Will seizure patterns change while taking birth control pills or other birth control methods?

Is there any way to be sure that I don't get pregnant?

All available birth control methods can be used by persons with epilepsy. These include:

barriers: diaphragms, spermicidal vaginal creams, intrauterine devices (IUDs) and condoms

timing: the "rhythm method" where intercourse is avoided during a woman's ovulation period or withdrawal by the man prior to ejaculation

hormonal contraception: birth control pills, hormone implants, or hormone injections

Of these, hormonal contraception is the most reliable method for most women, but it is not 100% effective, especially in women with epilepsy. Keep in mind that even in the general population there is always a slight chance of an unwanted pregnancy despite appropriate use of contraceptives.

If you have decided that you never want to have children, you can talk to your doctor about an operation called a tubal ligation. This procedure is the most secure way to ensure that you will never become pregnant. If you are in a monogamous relationship (only one male partner) he can have a similar operation, a vasectomy. This would not protect you from pregnancy with other male partners. These are serious decisions, and you need to think about them carefully before choosing either of these procedures.

How do I know which method is best for me?

You need to work with your gynecologist and your neurologist to choose the birth control method that is most appropriate for you. It is possible that your antiepileptic drug (AED) may make your hormonal birth control less reliable, resulting in an unwanted pregnancy. You and your physicians may consider different combinations of hormonal birth control and seizure medications to find the one that works best for you.

How will my seizure medication affect my hormonal birth control?

There are complex interactions between the hormones (estrogen and progesterone) contained in birth control pills or devices, and some of the medications used to control seizures. Some of these medications increase the breakdown of contraceptive hormones in the body, making them less effective in preventing pregnancy. The seizure medications that have this effect are often called "liver enzyme-inducing" drugs. They are carbamazepine (Tegretol), phenytoin (Dilantin), phenobarbital (Luminal), primidone (Mysoline), and topiramate (Topamax).

Valproate (Depakote) and felbamate (Felbatol) do not increase breakdown of hormones, and may even increase hormonal levels, which may require an adjustment in the dose of your birth control.

Gabapentin (Neurontin) and lamotrigine (Lamictal) have no effect on this system and do not interfere with the effectiveness of hormonal birth control.

Are there special concerns about "the pill" for women with epilepsy?

Yes, there are. The popular "mini pill" has a relatively small amount of estrogen (less than 35 micrograms.) That's not enough to protect women with epilepsy from becoming pregnant, because many of the commonly prescribed seizure medications reduce the amount of time that hormones are in your bloodstream. You may need contraceptive pills with higher doses of estrogen, and even then, there is a risk of unexpected pregnancy. It is a good idea to use barrier methods (a diaphragm, spermicidal cream or a condom) in addition to the contraceptive pill, if you are taking one of the seizure medications that speed up the breakdown of the hormones in birth control pills.

Are there problems with other forms of hormonal birth control?

Hormonal implants, like levonorgestrel (Norplant) which is placed under the skin, may not provide effective birth control protection if you are taking certain epilepsy drugs. The medications that cause the most problems with Norplant are the "liver enzyme-inducing" seizure medications such as carbamazepine (Tegretol), phenytoin (Dilantin), phenobarbital (Luminal), primidone (Mysoline), and topiramate (Topamax). These antiepileptic drugs increase the rate of breakdown of birth control hormones.

Medroxyprogesterone (Depo-Provera) is a hormonal injection used for birth control and it may need to be given more frequently in women with epilepsy taking medications such as those mentioned above. If you are using one of these forms of birth control, and you take one of the liver enzyme-inducing medications, it is a good idea to use a second barrier method of contraception in addition, such as a diaphragm, a spermicidal cream, or have your partner use a condom.

Are there any warning signals if my contraception is not working?

Bleeding in the middle of your cycle while you're on hormonal contraception could be a sign that you are ovulating and may become pregnant. If bleeding occurs, ask your doctor to help you select an additional form of contraception such as a diaphragm, spermicidal vaginal cream, or a condom. It is important for you to know that hormonal contraception can fail without mid-cycle bleeding.

Does it matter that my periods aren't regular?

Yes, because it may make hormonal birth control and timing methods more complicated. Usually, irregular menstrual cycles mean that hormones are out of balance in some way. It is important for your gynecologist and your neurologist to know if your periods are irregular so that they can help you choose the best method of contraception. It may be necessary to consult with an endocrinologist, a doctor who specializes in diagnosing and treating hormonal problems.

Will my seizure pattern change if I use hormonal birth control?

Current research does not indicate changes in seizure frequency when women with epilepsy use hormonal birth control, but individual reports suggest they may change. Some women have reported more seizures, some have reported less. If you notice a change in your seizure pattern when you use hormonal birth control, contact your physician.

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Genetics and Epilepsy

What is genetics?

Genetics is the study of genes, which are the basic units of heredity. Human beings have many thousands of genes. Each of these genes influences certain traits such as hair color, eye color, blood type, and many other characteristics. People are different with regard to these traits because their genes are different. Children look similar to one or both parents, for example, or have traits similar to their grandparents and other relatives, because of certain genes which have been passed or inherited from one generation to the next.

I thought we inherited different traits because of our chromosomes. What is the difference between genes and chromosomes?

An easy way of thinking about a chromosome is as a "package" filled with many genes.

The human body is made up of millions of cells. There are many different types of cells such as brain cells, muscle cells, and skin cells. Most cells in the body contain chromosomes. Each of these cells holds 23 pairs of chromosomes (46 total). One member of each pair is inherited from the mother and the other from the father. Genes are located on chromosomes and, thus, are passed from both parents to the child.

Genes, in turn, are made up of a substance called DNA (deoxyribonucleic acid). Genes give the cell instructions to make proteins, which are necessary for the body to do all the things that it does.

That sounds so complicated. What if something goes wrong?

It is complicated. Genes can be altered in many ways. Changes in the DNA that cause a protein to not work normally or stop working altogether are called "mutations." Environmental factors can also affect the way cells work.

Some mutations may result in disease and some of these conditions can be passed on to future generations.

Is epilepsy inherited?

Some types of epilepsy are. Epilepsy is not a single disorder, but a collection of many disorders that all have in common the tendency to cause a person to have seizures. When individual characteristics are caused by single genes, they are called "simple" genetic traits. Only a few rare types of epilepsy are caused by alterations in single genes. Most seem to be caused by a complex interaction among multiple genes and environmental influences.

I'm pregnant and I have epilepsy. Is my baby likely to have seizures, too?

Certain types of epilepsy do seem to run in families. Some studies have shown that the risk of epilepsy in brothers, sisters and children of people with seizure disorders ranges from 4-8% (that is, between about 1 in 25 and about 1 in 12). The risk in the general population is about 1-2% (between 1 in 100 and 1 in 50). However, it's important to remember that although the risk is higher than in the general population, most people with epilepsy do not have any relatives with seizures, and the great majority of parents with epilepsy do not have children with epilepsy.

Which types of epilepsy are most likely to be inherited?

People who have a generalized epilepsy (one where the EEG pattern shows both sides of the brain involved at the beginning of a seizure) seem somewhat more likely to have other family members with seizures than those with a localization-related epilepsy (also called partial or focal, where the EEG pattern shows seizures beginning in a single area of the brain). Parents with a history of generalized absence (childhood petit mal) seizures are more likely to have children with the same condition than those with other generalized seizures or focal seizures.

Some of the other factors that seem to be involved in inheritance are:

  1. Age when epilepsy begins -- Children of people whose seizures started early in life (for example, before 20 years of age) have a greater risk of developing epilepsy than children of people whose seizures started later in life.
  2. Mothers and fathers with epilepsy -- Studies have shown that the risk of epilepsy is about twice as high in children of women with epilepsy than in children of men with epilepsy. Research has shown that this is not related to pregnancy or birth complications, maternal seizures during pregnancy or maternal antiepileptic drugs during pregnancy. More research is needed to explain this difference.
  3. Cause of epilepsy -- The risk for developing epilepsy does not seem to be increased, compared with the general population, in relatives of people who have epilepsy caused by serious brain injury that occurs after birth due to conditions such as strokes, brain tumors, severe head trauma or brain infections.
Can epilepsy skip a generation?

Yes, it can. As discussed earlier, most types of epilepsy are caused by multiple genes and environmental influences. Not everyone who carries genes that make him or her more likely to develop epilepsy will, in fact, do so. Therefore, even if the genes are passed on, not every generation in a family will have seizures.

How can I find out what the risk is for my baby to inherit my type of epilepsy?

Ask your physician to refer you for genetic counseling. Specially trained physicians or nurses, genetic counselors, and other health care professionals can help you study your medical history, find out facts about your family history and, if possible, calculate the risk for you and your baby. They may recommend certain laboratory tests to get more information.

It's important to remember that although there is a lot of evidence that genes play an important role in causing epilepsy, exactly which genes are involved has not been identified for most people who have seizures. Studying the families of people who have epilepsy will help increase our knowledge and perhaps, in the future, will lead to new treatments for epilepsy or even measures to prevent epilepsy.

If more than one member of your family has a history of epilepsy or seizures, please consider participating in the Foundation's Gene Discovery Project. Completion of a confidential online questionnaire by you or a family member will allow scientists to determine whether the pattern of epilepsy found in your family could be valuable for further study. Your participation may help lead to exciting new discoveries about genetics and epilepsy.

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Pregnancy and Epilepsy

If I become pregnant, what are my chances of having a healthy baby?

Your chances of having a normal, healthy child are excellent -- greater than 90%. However, there are some increased risks for women with epilepsy that you should consider before getting pregnant, if possible. Both your neurologist and your gynecologist/obstetrician need to be involved in reviewing your antiepileptic drug (AED) and any potential medication changes prior to the beginning of a pregnancy.

Do women with epilepsy have problems getting pregnant?

Overall, women with epilepsy have fewer children than other women. This may be partly personal choice, but research has indicated that women with epilepsy have a higher rate of menstrual cycle irregularities and other gynecological problems that may interfere with fertility. Again, it is important that you talk with your gynecologist/obstetrician and your neurologist to sort through these issues.

What do I have to do to get ready for a pregnancy?

All women should be in good general health and pay attention to their nutrition before and during pregnancy. If finances are a problem, you may qualify for funded nutritional programs such as Women, Infants and Children Supplemental Food Program (WIC). Information about this program can be obtained from your physician's office or from your local health department.

A regular schedule with adequate exercise and appropriate rest will keep you physically fit and may help you manage stress. It is important to take vitamins with folic acid prior to and throughout pregnancy, to reduce the risk of certain kinds of birth defects. Since many of these problems occur very early in pregnancy (sometimes before you know you are pregnant), it is wise to start taking folic acid before becoming pregnant. Check with your physician about the exact dosage.

You may want to ask your physician for a referral to a genetics specialist who can help you assess the risks to your baby from your epilepsy, your seizure medication, and other inherited traits that may be present in your family.

Will my epilepsy cause problems during my pregnancy?

Most women who have epilepsy do not have any unusual problems with their pregnancy.

Studies do show, however, that women with epilepsy have an increased risk of vaginal bleeding both during and after pregnancy. Early and continued prenatal care by your obstetrician is very important. Consistent visits will immediately alert you and your doctor to any problems during your pregnancy and will allow for prompt treatment.

It is very important to avoid tobacco, alcohol, caffeine, and drugs such as marijuana and cocaine. Other dangers may come from environmental chemicals like pesticides, paints and oven cleaners. All of these toxins have been associated with pregnancy complications and poor pregnancy outcomes. By avoiding them, you can eliminate the risk of compounding any negative effects of your anticonvulsant medication.

How can pregnancy affect my seizures?

Most women will see no change in their seizures. One quarter to one third of women with epilepsy who become pregnant will have increased seizures during their pregnancy despite continued use of antiepileptic medication. During pregnancy, concentrations of seizure medication in your bloodstream may change or decrease, putting you at greater risk for seizures. Your physician may need to check blood levels of your medication more often, and may need to adjust your dose. The first two months after delivery are another time when your hormones and your body chemistry may change, affecting levels of your seizure medication. Check with your doctor or nurse about extra lab work that may be necessary.

If I have seizures when I'm pregnant, will they harm my baby?

Although many mothers who have seizures also have perfectly normal babies, seizures during pregnancy can harm the baby.

Generalized tonic clonic (grand mal) seizures can cause miscarriages, although this is a very rare occurrence. Generalized tonic clonic seizures during the last month of pregnancy can cause injury to the baby. If they occur during labor, they reduce fetal heart rate, which can indicate that the baby is in distress. The reason for the heart rate drop is not clearly understood. It is most likely due to a decrease in oxygen because the mother is not breathing adequately, or to a decrease in blood supply during the seizure, or both.

Generalized tonic clonic seizures during pregnancy have not been associated with birth defects. However, one study reported an increased risk for any type of negative effect if the mother had a seizure during pregnancy.

For all these reasons, it is important to reduce the number of seizures you have during pregnancy. Work closely with your doctor, be sure to take your medication as prescribed and avoid those things which may cause you to have a seizure. Notify your neurologist whenever you have a seizure.

However, don't panic if you have a seizure while you're pregnant. Remember, there are many normal, healthy babies born to women who had seizures during their pregnancy.

Is it true that medication taken for seizures may affect my child?

Yes, there may be some increased risk to children of women with epilepsy who are taking seizure medications. In the general population there is a 2-3% chance that a child will have a birth defect (also called a congenital malformation). In women with epilepsy, this risk is increased to 4-8%. In general, there seems to be higher risk if a woman is taking more than one seizure medication, particularly at high doses.

But there are other risks, to both mother and developing child, from uncontrolled seizures. Most women with epilepsy should continue their seizure medication, and whenever possible, take a single AED at the lowest dose that provides seizure control. It is important to work with your health care team to make the best decisions about medications during pregnancy. Remember, you should never stop taking your AED or change the dose without the advice and the supervision of your doctor. It is important to remember that even with the increased rate of certain kinds of birth defects, women with epilepsy who become pregnant have a better than 90% chance of having a healthy baby.

What kind of birth defects might my baby have?

Major birth defects are found more often in the babies of women with epilepsy than in other babies. Examples are cleft lip or palate (portions of the mouth do not grow together properly), heart abnormalities, and neurological problems such as spina bifida (deformities of the spinal cord). Surgery to correct the malformation may be necessary and even then it may not be possible to "fix" the problem completely.

Other problems that may occur are considered minor birth defects and primarily affect the baby's appearance. These can involve facial features, such as wide-set eyes or a short upper lip, or slight differences in the shape of the fingers and nails. These minor abnormalities do not cause any serious problems.

Some research studies have found that women with epilepsy more often have children with small head size, developmental delays, and possibly mental retardation than has been identified in the general population. Other studies don't support this finding. We don't know whether these abnormalit