Women

There is a lot to know about epilepsy. If you are a woman, there’s even more to consider, ranging from the impact of hormones on seizures, choosing seizure medications, birth control, pregnancy, parenting, menopause, bone health, and more.

 

Whether you’re new to epilepsy or have known about it for years, the more information you have the stronger you’ll be. Browse the information for women and make a list of your concerns and questions. Then talk to your health care team about what epilepsy means for you, as a female, at your age and hormonal state. Remember, as your body changes and you go through different life stages, you will have other concerns and information needs!

 

Information is only the start. You need to use the information to help you get the care you need.

 

Epilepsy and the medications used to control seizures can affect a woman’s sexual health. Infertility, sexual dysfunction, higher rates of birth defects, and even osteoporosis are real issues for women with seizures.

 

While we may know more now than in the past about women with epilepsy, many misconceptions still persist.

 

“Informal surveys at both the local and national levels show that women with epilepsy consistently report a lack of knowledge about the difficulties they face,” says Patricia Shafer, RN, MN, past chairman of the professional advisory board of the Epilepsy Foundation, who herself suffers from the disorder. “And a survey of health-care professionals, conducted a few years ago, revealed a lack of knowledge or uncertainty about what to do in terms of pregnancy management or problems of sexuality in such cases.”

 

Though Shafer and other experts who spoke with WebMD agree that strides have been made in understanding the unique problems facing women with epilepsy in the past few years, they point to a new dilemma: Getting the message out to general care practitioners and their patients.

 

“Many women tell me they’re aware of [some of the new findings],” says Shafer, who is also an epilepsy nurse specialist in the Comprehensive Epilepsy Center at Beth Israel Deaconess Medical Center in Boston. “But they don’t follow through.”

 

Alison Pack, MD, assistant professor of clinical neurology at Columbia University in New York, agrees. She and others are channeling their efforts at spreading the word on three of the main problems women with epilepsy face: reproductive health; bone health, particularly as a woman approaches menopause; and pregnancy.

Readdressing Reproductive Health

No one really knows exactly how seizures affect reproductive health, but there seems to a hormonal connection, experts say. According to Pack, the female hormones estrogen and progesterone act on certain parts of the brain where partial seizures often begin. Estrogen excites these brain cells and can increase the risk of seizures, while progesterone can inhibit or prevent seizures. Not all women with epilepsy develop seizures during their periods, and it is not clear why some women are more at risk.

 

“Since progesterone levels drop during menses, that may render a woman more susceptible to a seizure during that time period,” she explains.

 

In Boston, Andrew Herzog, MD, director of the Neuroendocrine Unit at Beth Israel Deaconess Medical Center, is working on a large National Institutes of Health-sponsored study designed to provide new answers. While final answers are still years away, preliminary evidence suggests that giving progesterone during menstruation may help to assuage hormone-related seizures.

 

But not all the news is good: Other studies have shown that some older epilepsy drugs, particularly valproate (sold under the brand names Depakote, Depakene, and Epivil), can interfere with ovulation, Pack tells WebMD. And that, in turn, can lead to infertility and long-term health problems, including high cholesterol levels, certain female-specific cancers, and diabetes, she says.

 

And the list doesn’t end there: “Women taking valproate also report excess weight gain and hair growth,” Pack says. Also, a recent study at Columbia University showed that women who took valproate at any time during the past three months were at increased risk of developing cysts in their ovaries.

 

“The bottom line,” Pack says, “is that I tend not to prescribe valproate as a first-line drug for most women with epilepsy who are in their reproductive years. That’s not to say that valproate is not a good drug, but with so many other choices available, [for these women] I tend to pick something that won’t have these side effects.”

 

While a variety of factors need to be considered when choosing a medication to control seizures in women with epilepsy, Pack says many neurologists have indicated a preference for Lamictal due to its relatively safe side-effect profile.

 

According to the Epilepsy Foundation, Lamictal neither increases the breakdown of female hormones nor interferes with the effectiveness of hormonal birth control, unlike other seizure medications.

 

But for women with epilepsy who also suffer from migraine headaches, Topamax is usually considered the drug of choice because of its headache-relieving properties, Pack says.

Epilepsy and Birth Control

Given the complex interactions between hormones and seizures, it’s not surprising that certain seizure medications can prevent birth control pills from working effectively, experts note. These medications can affect a system in the liver that breaks down medications. According to the Epilepsy Foundation, the so-called “liver enzyme-inducing” drugs — Tegretol, Dilantin, phenobarbital (Luminal), Mysoline, and Topamax — increase the breakdown of contraceptive hormones in the body, making them less effective in preventing pregnancy. Valproate and Felbatol, on the other hand, can actually raise hormonal levels, which may require an adjustment in dose.

 

Like Lamictal, Neurontin has no effect on hormonal balance and thus does not interfere with the effectiveness of birth control pills.

 

No matter what seizure medication you are on, it’s important to realize that the popular “mini-pill” has too little estrogen — less than 35 micrograms — to protect women with epilepsy from becoming pregnant. The reason: Many of the commonly prescribed seizure medications reduce the amount of time that hormones are in your bloodstream, Shafer says.

 

Her advice: “Talk to your doctor about what type of contraception is best for you.” In many cases, a combination of a pill and a barrier method may be the best option.

Sexual Dysfunction

Problems with low sexual desire, difficulty with arousal, and painful intercourse are not uncommon among women with epilepsy. According to Pack, there are a variety of reasons for such problems, many of which can be helped by a doctor or therapist. Some women may experience feelings of low self-esteem, for example, while others may have vaginal dryness caused by the disease itself.

 

“As embarrassing as it may be, it is important to speak openly with a health-care professional you trust as many of these problems can be solved,” Pack says.

Bone Health

Though bone health is of concern to all women as they age, women with epilepsy face unique challenges, Pack says.

 

“Some of the older medications such as phenytoin (Dilantin) and phenobarbital have been shown in studies to raise the risk of osteoporosis, which in turn can raise the risk of bone fractures,” she tells WebMD. And in Pack’s own trial of 70 women, those taking Dilantin had decreased bone density at the hip at one year compared with those on other drugs.

 

Pack notes that “we really don’t have good data yet on some of the newer agents, [but] preliminary data suggests that valproate may also have a negative effect, increasing the risk of bone turnover, a precursor of osteoporosis.”

 

Since many of the anti-epilepsy drugs increase the risk of developing the bone-thinning disease osteoporosis, women with epilepsy should ask their doctors about bone-boosting supplements and annual bone density scans, experts tells WebMD. Some seizure medications interfere with the absorption of vitamin D, the vitamin that is necessary to help build strong bones.

 

Be sure to get the recommended dietary allowance of both calcium and vitamin D in the diet, Pack says. The typical recommended intake of vitamin D in women of childbearing age is 200-400 IU. For calcium, the recommended intake is 1,000-1,400 mg per day.

Combating Birth Defects

Though women with epilepsy were once discouraged from having babies due to the health risks of mother and fetus alike, more than nine in 10 of such women now have healthy babies. Nevertheless, there are special concerns to be faced.

 

Though some women say they would rather go off their medication during pregnancy than risk hurting their fetus, doctors generally advise against this.

 

“It really depends on the individual,” Pack says. “Some women must continue to take their drugs or they will have a seizure, and that could be worse to both the mother and the fetus than not taking the drug. There’s a risk of preterm delivery, miscarriage, and decreased oxygen to the brain that can result in permanent brain damage, even death.”

 

On the flip side, there is a chance that some anti-seizure drugs can cause birth defects in the newborn. And it’s not a concern to be taken lightly: The anti-epileptic drug phenobarbital went on the market in 1912, but it was not until the 1990s that articles about its harmful effects on the fetus began to appear, says Lewis Holmes, MD, professor of pediatrics at Harvard Medical School and chief of the pediatric and teratology unit at Massachusetts General Hospital in Boston.

 

Because some seizure medications are known to lower levels of folate, which is associated with birth defects, women of childbearing age should take folate supplements (400 mg per day) as part of a healthy diet.

 

Holmes, director of the Harvard-based Antiepileptic Drug (AED) Pregnancy Registry, says his group’s goal is to detail the risk of birth defects in women taking widely used anticonvulsant drugs. So far, his team has released two reports, the most recent on babies born to 149 women who took the anticonvulsant drug valproate during pregnancy.

 

About 11% of the newborns developed major birth defects, including heart abnormalities, extra fingers, kidney problems, spina bifida, and clubfoot. In comparison, only 1.6% of babies born to women not exposed to any antiepileptic drug had a defect, according to the study, presented in 2003 the 23rd Annual Meeting of the Society for Maternal-Fetal Medicine.

 

An earlier report by Holmes, published in the journal Teratology in 2001, revealed an elevated rate of fetal malformations, particularly cleft lip and palate and heart defects, in babies of women being treated with phenobarbital.

 

And in October, researchers from the U.K. reported significant reductions in IQ scores among children whose mothers took the epilepsy drug valproate during pregnancy. These children’s IQs were found to be “in the low average” range.

 

Holmes urges any woman with epilepsy who is thinking about getting pregnant or who is pregnant to call the AED Pregnancy Registry at (888) 233-2334. “It’s important to enroll early — before you know the outcome of the pregnancy,” he says. “And be reassured that your name will not be given to your insurance company or anyone else.”

The Bottom Line

If you have epilepsy and are thinking about getting pregnant, here is the experts’ advice:

 

Ask for a referral to a neurologist or an epilepsy specialist.

• Ask if you really need to be taking epilepsy medication for the course of your pregnancy.
• If you do need to be on seizure medication, try to ensure that you only take one — not multiple — seizure drugs during the course of the pregnancy.
• Ensure that the lowest effective dose is prescribed.
• If possible, avoid drugs like Depakote that have been associated with a risk of neural tube defects.As for folic acid, “most of us recommend at least 1 mg, and if you’re actively trying to get pregnant, up to 4 mg a day,” she says. But Holmes is a little less enthusiastic. “Everyone has hoped that ‘if you take folic acid, you will avoid babies with birth defects,” he says. “That may be true in the case of spina bifida. But the mothers of all of the babies in our study who developed birth defects were taking folic acid. We’re hoping higher doses will help, but that is just a hypothesis.”
• As for epilepsy nurse Shafer, she says she gave birth to a healthy boy 12 years ago. “He was the perfect baby,” she says. “He did have an occasional seizure, but they waned this summer. With the proper care, hopefully any couple with epilepsy can have the same fulfilling experience as me.”

The nurse who helps me with my epilepsy told me I was “going into puberty” and might “outgrow my medicine 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 as 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 or when you ovulate, 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 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, 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 not drinking or doing drugs. Its seems like 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 our Community Forums.

I seem to have more seizures just before my period. What can I do?

Among women with epilepsy, about half say that they have more seizures around the time of their menstrual period (especially just before it). Some others report seizures at the time of ovulation, when the ovary releases an egg. This occurs about halfway between periods. Seizures that are linked to the menstrual cycle are called catamenial epilepsy. Controlling these seizures is a difficult problem. There is no clearly effective hormonal therapy. Some women take slightly higher doses of their seizure medicine at these times, or they add another medicine.

 

Talk to your health care team managing your epilepsy. Not all doctors are familiar with treatments for catamenial epilepsy, and you may benefit from seeing a specialist in epilepsy and women’s health. Tests to look at hormonal function as well as seizures may be needed before knowing what options may work for you.

Can I have a healthy baby if I have epilepsy?

Over 90% of babies born to women with epilepsy are normal and healthy. The risk that the child of a woman with epilepsy will have a major birth defect is approximately 6%, compared to 2.5% in the general population. This increase is probably related to seizure medicines and perhaps some genetic factors.

 

It is important to discuss pregnancy with your doctors ahead of time. There are many things you can do to reduce the risk to your baby. You probably will need to continue taking seizure medicines, but your doctor will work with you to find the lowest amount that will control your seizures. Getting good care before and during your pregnancy will help to improve the chances that your baby will be healthy.

Will my seizure medicine interfere with birth control pills?

Certain seizure medicines can increase the breakdown of the hormones in birth control pills or injections. This means that the birth control may be less effective and you could become pregnant. These seizure medications include: phenytoing (Dilantin, Phenytek), carbamazepine (Tegretol, Carbatrol), phenobarbital, primidone (Mysoline), felbamate (Felbatol), oxcarbazepine (Trileptal), topiramate (Topamax), and perampanel (Fycompa).

 

Some women successfully use a type of pill with a higher amount of estrogen, but there is no guarantee of full protection. Other options may include:

• Barrier methods (such as a diaphragm or condom) – along with or instead of the birth control pills.
• Intrauterine device or IUD – placed inside the uterus.
• Patch or vaginal ring
• Injections or shots of progesterone (Depo-provera) – may need to be given more frequently when certain seizure medications are used.
• Progestin implants – placed under the skin.

What else should I consider?

For some women, epilepsy can be disabling and cause many different health problems. Some women may have epilepsy and other disabilities too that may affect affect mobility, sensation, pain, thinking or memory, sleep, fatigue, sexuality and other hormonal problems. Unfortunately, these issues are often not talked about openly and few practitioners are taught how to care for people with multiple disabilities or health problems. Even fewer know the unique issues for women with disabilties.

 

Some other issues you should consider include:

• The meaning of having a disability.
• Cultural views towards women and disability.
• Ways of communicating effectively.
• The impact of disabilties on relationships and families.
• Other resources needed to manage disabilities.
• The awareness and expertise of the health care team on managing health needs of women wtih epilepsy and other disabilties.

Does epilepsy affect the age of menopause?

Menopause is the time of life when a woman’s ovaries stop working. It usually occurs at about age 50. There is some evidence that it may occur a decade earlier in some women with epilepsy, especially those with catamenial epilepsy (worsening of seizures near the time of menstruation) or high seizure rates. Some doctors think this difference may be related to the effects of seizures on the brain structure called the hypothalamus or the pituitary gland, but more research is needed. Most women with epilepsy experience menopause at about the same age as other women.

How does menopause affect seizures?

We know that the hormones produced by the ovaries, including estrogen and progesterone, can affect seizures, so we should expect changes as the levels of these hormones change around the time of menopause. The relationship is complicated, however. Estrogen can increase seizure activity but progesterone can reduce it. When levels of both hormones decrease at menopause, the result is hard to predict.

 

As a group, women with epilepsy who have gone through menopause have about the same frequency and severity of seizures as younger women, but this statistic hides a lot of individual differences.

• In one study, one-third of the women who had epilepsy before menopause reported no change in their seizures. A slightly larger proportion reported worsening of their seizures, and a slightly smaller number reported improvement. (There was even a group in which seizures occurred for the first time during or after menopause, with no known cause.)
• Another study also found groups in which seizures were unchanged, increased, or decreased.  Women who had a pattern of catamenial epilepsy were more likely to have fewer seizures after menopause, but they had more seizures during the period of changes just before menopause (called perimenopause).
• Both of these studies involved small numbers of women. Larger studies are needed to better identify which women are likely to have improved or worsening seizures. In the meantime, most women with epilepsy will need to take a wait-and-see approach to seizure management as they experience menopause.

What about hormone replacement therapy?

Hormone replacement therapy (HRT) after menopause for any woma is controversial for many reasons.

• It is effective against the common complaints of menopause, such as hot flashes, vaginal dryness, and difficulty sleeping.
• It also seems to help prevent osteoporosis, softening of the bones.
• But it does have its down sides. It is no longer recommended to prevent heart disease. Certain types of HRT appear to increase the risk of stroke and the risk of breast or uterine cancer in some women.
• Whether to use HRT or not is an individual decision that depends on many things.

Women with epilepsy considering HRT have extra factors to consider.

• Impact on seizures: One small study suggested that seizure frequency increased in women who used HRT, but another study found that women who used the type of HRT that includes progestin (a form of progesterone) were much less likely to have worsening of their seizures than those who took only estrogen.
• Impact on bone health:The role of HRT in preventing osteoporosis can be especially important for women with epilepsy, since seizures can increase the risk of falling and breaking weakened bones. The problem is worsened by the fact that certain seizure medicines can cause bone loss. These medicines include phenytoin (Dilantin or Phenytek), carbamazepine (Tegretol or Carbatrol), phenobarbital, primidone (Mysoline) and valproic acid/valproate (Depakene or Depakote). Women who take these medications should be especially careful to get enough vitamin D and calcium. Exercise is also important to and keep bones strong. If you and your doctor decide against HRT, you can try one of the other medications that can help keep your bones strong.
• Impact on hot flashes: If you are troubled by hot flashes, you may be interested in a recent report that the seizure medicine gabapentin (Neurontin) can reduce their frequency and severity. This could be an alternative approach for some women. Talk to both your neurologist and gynecologist about the best way to manage the changes of menopause without upsetting your seizure control or causing other health problems.