More than one million women and girls in the United States are living with seizure disorders. They face many 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 of Delaware’s role is advocating for all people with epilepsy, we are committed to addressing the unique health concerns of women with epilepsy.
Women and Hormones
Is there a connection between seizures and hormones?
Yes, however we do not understand it very well. We do 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.
Birth Control for Women with Epilepsy
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 because the liver is the organ that breaks down these hormones. They are carbamazepine (Tegretol, Carbatrol), oxcarbazepine (Trileptal), 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), lamotrigine (Lamictal), levetiracetam (Keppra), and tiagabine (Gabitril) 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 low-dose combined oral contraceptive pill has a relatively small amount of estrogen (less than 35 micrograms). That’s not enough to protect women with epilepsy who take enzyme-inducing AEDs from becoming pregnant. 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, Carbatrol), oxcarbazepine (Trileptal), 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 earlier.
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?
Breakthrough bleeding while you’re on hormonal contraception, for example during the middle of your cycle, could be a sign that you are ovulating and may become pregnant. If you are using birth control pills, bleeding at any other time than when you switch from the active to the inactive pills may indicate that the pills are not working. If bleeding occurs, ask your doctor to help you select an additional form of contraception such as a diaphragm, spermicidal vaginal cream, or condom. It is important for you to know that hormonal contraception can fail without signs of breakthrough 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.
Epilepsy and Sexual Relations
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.
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 dilation 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.
Pregnancy and Epilepsy Medications
Studies which are being conducted in the area of pregnancy and epilepsy have helped to establish some guidelines for women with epilepsy. Many questions remain unanswered, however, and this is why continued research is so important.
Generally speaking, having epilepsy should not prevent a woman from planning a family. Over 90 percent of the babies born to women with epilepsy are normal and healthy. This percentage is even higher if the pregnancy is planned in advance with the consultation of a neurologist, any necessary adjustments are made to the anticonvulsants and supplemental folic acid is begun prior to conception, and the woman receives early and ongoing prenatal care.
American women who take anticonvulsant medications face difficult choices between their medical need for treatment and the potential risks associated with the drugs during pregnancy. In the vast majority of cases, the risk of seizures outweighs the risks of the medications. Most women do not have the luxury of stopping medications during pregnancy without seizure recurrence. A recent rigorous review of the literature, outlined in the AAN Updated Practice Parameter Statements on Pregnancy in Women with Epilepsy, is very encouraging that the risks can be minimized, especially by considering recent findings of differential risks between medications. There are several relatively safe options for anticonvulsant medications during pregnancy, and more is known about how to adjust them during pregnancy for the healthiest outcome for both the mother and the newborn.
While the vast majority of women who become pregnant while taking these medications deliver healthy babies, new research is showing that some anticonvulsants increase the risk of major malformations (including heart, spinal cord and cleft lip/cleft palate abnormalities) and cognitive problems in children exposed to them during the mother’s pregnancy.
In general, studies of these medications have focused on the ‘older’ drugs (that is, those approved prior to 1980) such as carbamazepine, phenobarbital, phenytoin, primidone and valproate, and we now have good information on one of the “newer” drugs, lamotrigine. A convergence of data from multiple recent studies demonstrate an increased risk for valproate to the unborn child and suggest that valproate is not the best first choice for women of childbearing age; however, when no other anticonvulsants work to control an individual’s seizures or other neuropsychiatric illness, then the risk may be reduced by limiting the dose during pregnancy. Guidelines just developed by the American Academy of Neurology and the American Epilepsy Society recommend that women with epilepsy avoid taking valproate during pregnancy and avoid taking more than one epilepsy drug at a time (polytherapy) during pregnancy if possible. Valproate use, and to a lesser extent polytherapy use, have been linked to an increased risk for birth defects and an increased risk for developmental delay in the children after exposure during pregnancy. However, it is extremely important that women taking any antiepilepsy drug should not discontinue the drug on their own, but should consult with their doctor if they are, or may become, pregnant.
Very little is known about the long term or pregnancy-related effects of most of the anticonvulsants approved within the past 15 years. The Epilepsy Foundation is calling for more research on pregnancy and long term effects of all the newer drugs. In addition to its recommendation that women who take anticonvulsants and become pregnant enroll in the North American Pregnancy Registry. The Epilepsy Foundation is urging women to increase their chances of a successful pregnancy and long term health by taking the following actions; to work with their doctors on the best choice of medication before they become pregnant; to review anticonvulsant risks and benefits with their healthcare providers; to discuss medicine changes before pregnancy begins; to take folic acid and vitamin supplementation before and during pregnancy; to have their medication levels monitored during pregnancy; to avoid stopping an anticonvulsant abruptly; to explore ways of preventing other negative effects on quality of life; and to keep current on emerging research.
What are the chances that my children will have epilepsy?
As a person with epilepsy, your offspring are at a slightly higher risk than the general population for developing this disorder.
If both parents have epilepsy, the risk that their offspring will develop epilepsy increases, although estimates vary widely. Some statistics say the risk of developing epilepsy when both parents have it is about 5 percent, while others place it closer to 15 or 20 percent.
Parenting and Genetics
Will my seizure pattern change after I have my baby?
That’s unpredictable. Some women with epilepsy have changes in their seizures while they are pregnant. During pregnancy, concentrations of your antiepileptic drug (AED) may change or decrease, putting you at greater risk for seizures. Your physician may increase your seizure medication for better seizure protection.
After your baby is born, your hormones change and medication levels in your bloodstream tend to rise, increasing the possibility of side effects. These factors may make it necessary for your physician to check medication blood levels more frequently in the first few months after delivery. Keep in close contact with your physician during this time until your body returns to its pre-pregnancy state.
Stress and lack of sleep make my seizures worse. I’m worried about taking care of my baby.
Every parent has to think about this. Women who have just had a baby will have disturbed sleep, extra work and stress, and hormonal changes — and for a woman with epilepsy these factors can increase the risk of seizures. Include other family members and friends in the care of your baby, to give you a chance to rest. As a parent, during pregnancy and after delivery, the best thing you can do for your baby is to take good care of yourself. Get enough sleep, eat well, exercise regularly and take your prescribed seizure medication. Talk over any problems with your neurologist and your primary health care provider, and get their advice about any necessary adjustments in your lifestyle.
I want to breast-feed my baby. Will that be safe?
For most women with epilepsy, breast-feeding is a safe option. All seizure medications will be found in breast milk, but this usually does not affect the baby who has been exposed already to the mother’s medication during pregnancy.
Talk with your doctor about your medications and breast-feeding, particularly if you are taking phenobarbital (Luminal), primidone (Mysoline), or benzodiazepines (valium, lorazepam, and clonazepam). Women who breast-feed while taking these medications will need to watch their baby carefully for any signs of excessive sleepiness or irritability. If your baby fails to gain weight because it is too sleepy to eat, you will need to follow up with your child’s pediatrician, the nurse, or a lactation (breast-feeding) consultant recommended by the doctor about switching to formula. A combination of breast and bottle may be an option depending on your baby’s symptoms. If you consult a breast-feeding specialist, this individual will work with your child’s pediatrician, the nurse, and you to determine the best approach. You may be asked to keep careful records of the time of each feeding and the number of minutes your baby breast-feeds, as well as voidings and stoolings so the doctor can evaluate how much nourishment your baby is getting.
Continuing to take your prenatal vitamins is important if you breast-feed and if you plan on having another baby.
While you are pregnant, it’s a good idea to learn as much as you can about breast-feeding and about resources in your community so you’ll know what to expect and what supports are available to you.
What if I have a seizure while I’m holding the baby?
There is no way to ensure that you won’t have a seizure while you are caring for your new baby. But you can always have a plan to protect the baby if a seizure occurs. If you have a warning before you have a seizure, you can maintain a secure area in each room of your house where you can safely lay the baby down if you feel a seizure coming on.
Some women don’t experience an immediate warning before a seizure, but they may feel a bit strange for several hours earlier. If this describes you, you may want to have a friend or family member stay with you during a day when such a feeling occurs.
Whether or not you have one of these warnings, you can minimize the risk of potential harm to your baby by taking the following precautions whenever the two of you are alone.
- If you use a changing table, make sure your baby is always strapped in. Or you may want to change your baby’s diapers and clothing on the floor.
- Never give your baby a bath by yourself. Make sure someone else is with you in the room.
- Always fasten the safety straps whenever you put your baby in an infant seat, even if you intend to be right there.
- If you do not have generalized tonic-clonic (grand mal) or other falling-type of seizures, you may want to use a cloth-front baby carrier whenever you are walking or standing and holding your baby.
- When feeding your baby, you may want to use an infant seat, or use pillows to make a comfortable seat on the floor.
- Never hold your baby while cooking, ironing, or carrying hot liquids.
Taking your medication as prescribed by your physician is the most important factor in reducing the chances of having a seizure while holding the baby. It is also very important to get enough sleep. Try to sleep when the baby sleeps, though this can be difficult if you have other small children and no one to help you. During the period when you first bring the baby home, you may need to enlist the help of family and friends to ensure that you get enough rest.
Family members may also be able to help you during the night, by taking turns with feedings. Some mothers who breast-feed extend their sleeping time by pumping breast milk into bottles and then refrigerating it, so another family member can feed the baby at night.
At least one study has shown that seizures are more likely to occur in the period following birth, known as the postpartum period. The processes of labor and delivery have stressed your body. It’s hard to find time to rest. You may be excited and anxious. Your hormones are changing. All of this contributes to stress, and sometimes to sleep difficulties as well.
What about night-time feedings and getting enough sleep?
Breast-feeding is good for your baby and good for you, but it may create more demands on you, especially at night with loss of sleep. Keep the baby next to your bed at night, and feed her in bed with you. Whenever you are feeding your child, sit or lie down — this is a perfect time to put your feet up and relax. If there is concern that loss of sleep may trigger seizures, breast milk can be pumped in advance and used for night-time feedings by your partner or another family member. Having a family member feed the baby at night is ideal but not always possible.
I have heard a lot recently about postpartum depression. Is that something I need to think about?
Women with epilepsy experience the same emotional adjustments as other women after having a baby. Be sure to discuss any changes in mood with your doctor, particularly if they continue or recur over time and if they prevent you from carrying out your normal routine.
I’m concerned about getting pregnant too soon after I have my baby. What can I do to prevent an unexpected pregnancy?
It’s a good idea to think about this. Breast-feeding and the expected hormonal changes in the months right after having a baby can make birth control complicated for any woman. Work with your neurologist and your gynecologist/obstetrician to choose the birth control method that is most appropriate for you.
If you are using hormonal contraception (birth control pills, hormone implants or hormone injections), you may need to consider using barrier birth control methods instead of, or in addition to your hormonal contraception. Barriers are diaphragms, spermicidal vaginal creams, intrauterine devices (IUDs) and condoms. Together, you and your health care providers can make the decision that will work best for you.
For both men and women who have epilepsy, there is an increased risk of bone disease due to certain medications that have been linked to reduced bone health. These include Dilantin, Tegretol, Phenobarbital and Depakote. The newer drugs are expected to be better but there is not enough clinical data yet to completely understand their effects on bone health. Some epilepsy medications also reduce calcium absorption as well as active levels of Vitamin D which is important for overall bone health.
It is recommended that anyone who has been taking epilepsy medications for five years or more should have a DEXA scan. About 35 percent of patients under the age of 40 were found that have osteopenia or osteoporosis. This is a new recommendation and most physicians are unaware of it; therefore you may need to educate your physician on why DEXA scans are an important part of maintaining your health.
Bone Density Tests
The thickness of your bones, or bone density, can be measured in a few ways. A heel scan is a screening test. The best test is a DEXA scan (no needles and it only takes 10 minutes). The DEXA scan looks at your bone density at the lower back (lumbar spine) and hip. It will give you some bone scores. The most important is the T score. The T score compares your bones to other women at their peak bone mass.
Epilepsy and Menopause
Menopause is the time in a woman’s life when her ovaries stop working, her menstrual periods stop and the level of sex hormones in her body decreases. We know that because hormones have an effect on brain function, seizure patterns may change in some women as they go through menopause, just as they may at other times of hormonal change.
I’m 50 years old and my periods are less frequent. I’m having hot flashes, too. Is this a different kind of seizure?
Probably not, although some women feel flushed as part of a seizure. It is common for a woman of your age to be going through menopause and having “hot flashes” as an uncomfortable side effect of menopause. Talk to your physician and your neurologist about this and let them help you sort it out.
I thought I had less estrogen after menopause and that estrogen sometimes caused seizures. Why wouldn’t my seizures get better?
It’s complicated. Estrogen does excite certain brain cells that may be involved in seizures. The other female sex hormone, progesterone, seems to inhibit or prevent seizures in some women. But both hormones decrease in your body with menopause so it is not easy to predict what will happen with your seizure pattern. Some women have more seizures as they go through menopause, some have less and many see no change at all.
My mother has thin bones and I’ve been told I should take estrogen when I get to menopause. Can I do that if I have seizures?
The decision to take estrogen is an individual one, based on a lot of factors you should talk over with your physician. Taking supplemental hormones at the time of menopause is called hormone replacement therapy (HRT). Estrogen may reduce the risk of heart disease in some women, and offers protection against osteoporosis (thinning of the bones). However, for some women, it carries an increased risk of uterine cancer or breast cancer. You and your doctor can weigh all the benefits and risks for you, taking into account your health and your family history.
If you take supplemental estrogen you will probably take progesterone, too. Taking progesterone may give you some additional protection from seizures, although more research needs to be done in this area. Natural progesterone, rather than synthetic, seems to be more beneficial in controlling seizures in some women.
If I can’t take estrogen, is there anything else I can do to keep from getting osteoporosis?
Yes. Eat a diet high in calcium and ask your doctor about calcium supplements with vitamin D. Get some regular physical exercise and limit alcohol intake. Don’t smoke. All of these things are a part of a healthy lifestyle in any woman and may reduce the risk of bone disorders after menopause.
Will my seizure medication change as I get older?
That depends on a lot of factors. If your seizures become more difficult to control, your physician may want to try other medications. As our bodies age, our metabolism changes and medication doses may have to be altered. Some seizure medications seem related to the thinning of bones. Check with your doctor to see if this could be a problem for you.
I’m middle-aged and my seizures got more frequent recently. Do I just have to accept that as a part of menopause?
It’s important to remember that menopause is usually a process, not a sudden event. A change in your seizure pattern deserves an evaluation by your physician. There can be many causes for increased seizures and not all are related to hormones.
For Teen Girls
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 Generalized Non-Motor (absence) (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. 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.
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.
A great resource dedicated to questions about sexual and reproductive health for girls with epilepsy is Girls with Nerve. Check out their website for tips on talking to your doctor, dating and stories from others.
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. For more information on laws in your state. (link to state driving laws).
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.