What You Should Know
In many ways, epilepsy is a different condition in a woman than in a man. The differences arise because of biological differences between women and men, but also because of the different social roles they play. As a result of these biological and social differences, women with epilepsy face special challenges, especially in the area of reproductive health.
SOCIAL CONSEQUENCES OF EPILEPSY IN WOMEN
Do people with epilepsy have problems socially? Does it affect them psychologically?
Epilepsy is a chronic disorder that may affect how you feel about yourself and your relationship 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 content 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 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. You can contact the Epilepsy Foundation or your local affiliate for further information.
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. For more detailed information, see Hormones and Epilepsy.
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. For additional information, see Special Concerns About Seizure Medications.
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. For more detailed information, see Hormones and Epilepsy.
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. For additional information, see Special Concerns About Seizure Medications.
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.
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. For more detailed information on these subjects, see Epilepsy and Sexual Relationships and Pregnancy Issues.
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. Your local affiliate can provide you with information about health care providers in your area.
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. Your local affiliate can provide you with information about health care providers in your area.
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:
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.
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.
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.
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.
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.
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.
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. Your local Epilepsy Foundation affiliate may have information about specialists in epilepsy care who can help you.
BIRTH CONTROL FOR WOMEN WITH EPILEPSY
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:
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.
- 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.
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.
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.
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.
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.
What are some of the other factors that seem to be involved in inheritance?
- 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.
- 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.
- 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.
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.
HEALTH ISSUES AFTER YOUR BABY IS BORN
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.
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.
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:
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, although 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. During this period your neurologist will want to check your antiepileptic drug levels to make certain they’re within a range to protect you from having seizures. You will also want to make sure that those levels are not too high. Your doctor or nurse will be able to explain the symptoms of high drug levels. Even though you are taking the same amount of medication as you were before your delivery, those levels can rise during the postpartum period. This is why it is so important to continue to see your neurologist regularly.
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.
- 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 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, although 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. During this period your neurologist will want to check your antiepileptic drug levels to make certain they’re within a range to protect you from having seizures. You will also want to make sure that those levels are not too high. Your doctor or nurse will be able to explain the symptoms of high drug levels. Even though you are taking the same amount of medication as you were before your delivery, those levels can rise during the postpartum period. This is why it is so important to continue to see your neurologist regularly.
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.
If you are alone and bottle-feeding, don’t carry the baby to the kitchen — leave your baby in the crib while you prepare the bottle and bring it back with you.
If you are alone and bottle-feeding, don’t carry the baby to the kitchen — leave your baby in the crib while you prepare the bottle and bring it back with you.
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.
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.
MENOPAUSE AND EPILEPSY
What does the change of life have to do with my seizure disorder?
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. You may contact the Epilepsy Foundation for the information sheet like this one on Hormones and Epilepsy.
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.
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.
