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.
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For Women
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• For women who have epilepsy, the risk of having a baby with a birth defect is double the risk for women in the general population. Any woman, whether she has epilepsy or not, has a two to three percent chance of having a baby with a birth defect. For women with epilepsy, the risk is four to eight percent. Even so, mothers with seizures have a better than 90 percent chance of having a normal, healthy baby. The actual cause of the increased risk of malformations has not been determined, but there are three strong possibilities:
- The birth defects are genetically related to whatever causes the epilepsy.
- The birth defects are related to antiepileptic medications needed to control seizures.
- The birth defects occur because the baby may have a genetic susceptibility to possible harmful effects of medications.
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 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.
• 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.
• There is a connection between hormones and seizures, 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.
• 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.
• There 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• There is a connection between hormones and seizures, 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.
• 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.
• There 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• - 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.
• 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.
• It matters if your menstrual cycle is irregular, 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.
• 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.
• 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.
• 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.
• 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.
• - 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.
• 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.
• It matters if your menstrual cycle is irregular, 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.
• 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 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.
• 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.
• Genetics 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 types of epilepsy are inherited. 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.
• 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.
• 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.
• Other factors 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.
• Epilepsy can skip a generation. 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.
• 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.
• 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.
• Genetics 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 types of epilepsy are inherited. 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.
• 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.
• 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.
• Other factors 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.
• Epilepsy can skip a generation. 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.
• 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.
• 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.
• Every parent has to think about lack of sleep and stress. 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.
• 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.
• 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. - 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.
• 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.
• 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.
• 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.
• Every parent has to think about lack of sleep and stress. 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.
• 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.
• 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. - 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.
• 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.
• 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.
• 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.
• 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.
• Hot flashes are probably not seizures, 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.
• Reduced estrogen due to menopause does not necessarily mean less seizures. 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.
• 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 you can't use estrogen to avoid osteoporosis, there are alternatives. 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.
• Whether or not your epilepsy medication changes as you get older 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.
• 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.
• Hot flashes are probably not seizures, 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.
• Reduced estrogen due to menopause does not necessarily mean less seizures. 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.
• 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 you can't use estrogen to avoid osteoporosis, there are alternatives. 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.
• Whether or not your epilepsy medication changes as you get older 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.
• 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 Parents
Pinpointing the cause of epilepsy is difficult at any age. In seven out of every ten cases, there is no known cause. These children are then said to have idiopathic epilepsy. “Idiopathic” is a Latin word meaning “of unknown cause.”
• Pinpointing the cause of epilepsy is difficult at any age. In seven out of every ten cases, there is no known cause. These children are then said to have idiopathic epilepsy. “Idiopathic” is a Latin word meaning “of unknown cause.” There are many possible causes of epilepsy in children, including: problems with brain development before birth; lack of oxygen during or following birth; a head injury that leaves a scar in the brain; unusual structures in the brain; tumors; a prolonged seizure with fever, or the after-effects of severe brain infections such as meningitis or encephalitis. When a cause can be identified, children will be described as having symptomatic epilepsy. The seizures are thought to be a symptom of the underlying brain injury.
• Genetic Factors: Epilepsy is a common disorder. Frequently, more than one person within an extended family may have seizures. In most cases, a clear pattern of inheritance of epilepsy within a family cannot be determined. However, there does seem to be a slightly increased risk among close relatives of people with seizures, compared to risk in the general population. It is therefore important to ask your relatives about a family history of seizures, and to share this information with your doctor. Some disorders that may cause symptomatic epilepsy are genetically caused, and in some families there is a clear pattern of inheritance. The Epilepsy Foundation is helping the search for genes through its Internet-based Gene Discovery Project. The project invites families with a history of seizures in various members to post their family trees (called pedigrees) on the project site for future review by genetics researchers.
• Seizures, Fevers, and other conditions: Febrile (fever-caused) seizures affect many children between the ages of 3 months and 6 years. Febrile seizures are not the same as epilepsy, although in rare cases they may be the first seizures experienced by a child who develops epilepsy later on. Febrile seizures occur when a child’s temperature rises rapidly, usually to 102 degrees or higher. There is often a family history of febrile seizures; they are most common around 18 months of age and affect between 3 and 4 percent of all children. Thirty to 40 percent of children who have a febrile seizure will have another one, but most children grow out of the tendency as they grow older. About 3 percent of children with febrile seizures go on to develop epilepsy. In children with epilepsy, fever (as well as some drugs, medications and sleep deprivation) may trigger seizures.
• Seizures and other conditions: Having a seizure is a sign of an underlying condition in the brain. In many cases it is the only sign of a brain disorder. In other cases it may be just one of many symptoms. Common brain conditions that may also be associated with seizures include tuberous sclerosis, cerebral palsy, mental retardation, autism and neurofibromatosis. Epilepsy associated with other brain disorders is usually treated in the same way as epilepsy from an unknown cause.
• In most cases, seizure management or first aid means keeping a child safe while the seizure runs its course. Fortunately, most seizures are brief and stop within a few minutes. The first step in any seizure management plan is to get your doctor’s advice. He or she knows your child’s seizure history and is in the best position to help you plan an appropriate response.
• Protect the child from injury while the seizure continues, but don’t forcefully restrain movements.
• Whenever possible, try to lay the child on a soft surface and turn on one side.
• Place something flat and soft under the head; loosen tight neckware.
• Do not place anything in the mouth.
• CPR should not be given during a seizure.
• Record approximately how long the seizure lasts.
• As the jerking slows down, make sure breathing is unobstructed and returning to normal.
• Do not try to give medicine or fluids until the child is fully awake and aware.
• Reassure the child and gently help to re-orient him or her as consciousness returns.
• Whenever possible, try to lay the child on a soft surface and turn on one side.
• Place something flat and soft under the head; loosen tight neckware.
• Do not place anything in the mouth.
• CPR should not be given during a seizure.
• Record approximately how long the seizure lasts.
• As the jerking slows down, make sure breathing is unobstructed and returning to normal.
• Do not try to give medicine or fluids until the child is fully awake and aware.
• Reassure the child and gently help to re-orient him or her as consciousness returns.
• Most doctors will never see your child have a seizure — they don’t happen often in the doctor’s office. It will help the doctor if you write down what the child was doing just before the seizure began, what happened during the seizure, how long it lasted, and how quickly your child recovered afterwards.
• Unless your doctor tells you otherwise, a seizure in a child with epilepsy that ends after a couple of minutes does not usually require a trip to the emergency room. However, if it lasts more than 5 minutes without any sign of slowing down, is unusual in some way, or if a child has trouble breathing afterwards, appears to be injured or in pain, or recovery is different from usual, call 911 for emergency help. It is always a good idea to discuss with your doctor in advance what to do if your child should have a prolonged seizure.
• For some children who have convulsive seizures that are prolonged — lasting several minutes — or occur in clusters, there are new treatments available that parents or caregivers can administer orally, rectally, or by injection to bring this type of seizure to an end. Ask your doctor whether these treatments would be appropriate for your child.
• Managing partial seizures: A child who has partial seizures that affect his emotions or sense of the world around him may be intensely frightened by the episodes. Children with this type of epilepsy need lots of reassurance — and an adult who keeps track of how often the seizures occur. If they become prolonged and frequent, emergency treatment may be necessary. Managing complex partial seizures requires gentle monitoring during the seizure, keeping hazards out of the way, reassuring the child in a calm voice, and keeping track of how long the seizure lasts. Prolonged confusion and clusters of complex partial seizures may also require at-home therapy as prescribed, or emergency treatment.
• Treatment with medicines: Childhood epilepsy is usually treated with seizure-preventing medicines called antiepileptic or anticonvulsant drugs. If the drugs don’t work or if the child has a lot of side effects, surgery, the ketogenic diet, or vagus nerve stimulation (VNS) may be tried.
• Status Epilepticus:
• Rescue medications are used to stop the seizures.
• Oxygen and other breathing support, as well as IV fluids can be given.
• If repeated seizures cannot be stopped with anti-seizure medications or other treatments, hospital staff may decide to put a person into a coma to stop the seizures.
• Continuous EEG monitoring is needed to watch seizure activity and how a person responds to treatment.
• Different tests are also needed to find the cause of the seizure emergency so it can be treated correctly. People with a known cause, such as a brain infection, brain tumor, or stroke, may have a worse outlook than those with no other medical problems or known cause.
• Children take the same antiepileptic meds as adults do. Medication may be prescribed as tablets, sprinkles, capsules or in syrup. These drugs are designed to prevent seizures. Some are successful with a limited number of seizure types; others have a broader range of action. Whenever possible, doctors try to control seizures with one drug. Some children, however, may have to take more than one. Children may respond so well to medication that no further seizures occur so long as the medication is taken regularly and an effective level is maintained in the child’s blood. Not having seizures does not mean that the medication is no longer needed. Most children require a minimum of several years of therapy. Always ask the doctor before stopping antiepileptic medication. Giving a child only part of the medication, or stopping it abruptly can cause a serious increase in seizure activity.
• Finding the right medication: The search for the best medication for any individual child may take quite a long time Children, like adults, respond to medications in different ways. Several drugs or different combinations of drugs may have to be tried in an effort to get the seizures under control. The goal of treatment is to achieve the greatest level of control, the lowest level of side effects, at the lowest possible dose. Common side effects from antiepileptic drugs include fatigue, nausea, changes in vision, and weight gain. Some side effects are linked to high dosages. Others are due to individual sensitivity or allergic reaction. Some tend to happen when a new medication is started, but go away (or become less of a problem) as the child becomes accustomed to it.
• Helping the treatment work
• Ask your doctor about possible side effects associated with the medicine and what you should do if you see them.
• Keep follow-up appointments. Some medications require periodic blood tests that are important to your child’s health. Ask the doctor at the end of each visit when he or she wants to see you both again, and make the next appointment then.
• Don’t change the dose or discontinue seizure medicine on your own without checking with your child’s doctor.
• Ask for refills from your pharmacy several days before the medication is due to run out.
• Ask your doctor whether any over-the counter medicines may interfere with the epilepsy drug your child is taking. Check with the pharmacist when buying other medicines.
• Ask your doctor how to handle fever associated with childhood illness. Ask, too, about the best way to give medication when a child has a stomach virus and cannot keep medication down.
• Find out what you should do if your child misses a dose of medication. Parents often worry that long term use of antiepileptic drugs may lead to drug abuse or dependency in their children. Most doctors say there is very little if any abuse of these medications among young people with epilepsy. In fact, refusing to take the medication is a more common form of rebellion among teenagers.
• When children are small, the parents are the ones who make sure the meds are taken on time. As children get older, they may take on more of this responsibility themselves. Even with the best of intentions, however, children may forget. One way of monitoring whether the medication is being taken is to count out (or teach the child to count out) each day’s doses and store them in a special container so you can track whether or not the tablets or capsules have been taken. If a school-aged child has to take medication during the day, check with the school about what arrangements should be made. Most school systems will not allow children to give themselves medication at school, but will arrange for the school nurse or other school official to do so.
• Surgery: If medicines do not control a child’s seizures, he or she may be a candidate for surgery. The most common form of epilepsy surgery removes a fairly small area of the brain where seizures begin. Sometimes, larger areas are removed. Other surgery, performed less often, blocks nerve pathways in the brain to stop the spread of seizures from one part of the brain to another.
• Ketogenic Diet: If medications fail to control a child’s seizures, your doctor may recommend a special high fat, low carbohydrate, restricted calorie diet. It is called a ketogenic diet. Calories are strictly limited, and parents have to be very careful not to allow the child to eat anything — even cookie crumbs or toothpaste — that isn’t on the diet or hasn’t been pre-measured and pre-weighed within the formula. The diet requires a team effort — the family, the physician, the dietitian, the nurse education team, and, if the child is old enough, the child himself — all working together to make sure the diet is followed and any side effects are monitored. WARNING: The ketogenic diet is serious medicine. It is not a do-it-yourself diet. It could have serious effects if not monitored by a physician and dietitian.
• Vagus Nerve Stimulation (VNS): Vagus nerve stimulation is a new type of treatment that may be tried when seizures cannot be controlled by other methods. The treatment works by sending regular small bursts of electrical energy to the vagus nerve, a large nerve in the neck that leads directly into the brain. The energy comes from a small, disk-like generator, about the size of a stop watch, that is surgically implanted under the skin on the chest wall. The generator is connected to lead wires under the skin, the ends of which are wound around the vagus nerve. The operation which places the device can be done on an inpatient or outpatient basis.
• Specialized care: Specialized care for children with hard-to-treat epilepsy is available at special centers around the country. They offer in-depth evaluation, surgery, the ketogenic diet, and VNS therapy.
• Ketogenic Diet: If medications fail to control a child’s seizures, your doctor may recommend a special high fat, low carbohydrate, restricted calorie diet. It is called a ketogenic diet. Calories are strictly limited, and parents have to be very careful not to allow the child to eat anything — even cookie crumbs or toothpaste — that isn’t on the diet or hasn’t been pre-measured and pre-weighed within the formula. The diet requires a team effort — the family, the physician, the dietitian, the nurse education team, and, if the child is old enough, the child himself — all working together to make sure the diet is followed and any side effects are monitored. WARNING: The ketogenic diet is serious medicine. It is not a do-it-yourself diet. It could have serious effects if not monitored by a physician and dietitian.
• Vagus Nerve Stimulation (VNS): Vagus nerve stimulation is a new type of treatment that may be tried when seizures cannot be controlled by other methods. The treatment works by sending regular small bursts of electrical energy to the vagus nerve, a large nerve in the neck that leads directly into the brain. The energy comes from a small, disk-like generator, about the size of a stop watch, that is surgically implanted under the skin on the chest wall. The generator is connected to lead wires under the skin, the ends of which are wound around the vagus nerve. The operation which places the device can be done on an inpatient or outpatient basis.
• Specialized care: Specialized care for children with hard-to-treat epilepsy is available at special centers around the country. They offer in-depth evaluation, surgery, the ketogenic diet, and VNS therapy.
• It may be helpful to talk with your other children about epilepsy, and encourage them to ask you questions about it. Children often have misconceptions and may even blame themselves in some way about what has happened to a brother or sister. They may be afraid they will start to have seizures, too. Siblings may also feel abandoned and lonely because the parents have been so focused on the problems of the child with epilepsy. Parents may have had to spend long hours at the hospital while the other children waited at home. Setting aside some special time for the other children in the family, and making time to answer their questions fully should help.
• Discipline: Ignoring behavior you don’t like (so long as no one is likely to get hurt by it) and rewarding good behavior is as likely to work for children with epilepsy as it is for other children. However, parents often worry that discipline or emotional upset because of a wish that is not being granted will cause a seizure. They may be tempted to give in to unreasonable demands from a child with epilepsy because of that natural concern. If this is something that happens in your family, ask your doctor about the level of risk for your child and how you can exert discipline in a way that is safe and reasonable.
• Informing relatives: Informed, understanding relatives are a wonderful source of strength when a child has epilepsy. Others may have beliefs about this condition that hail from an earlier time. They may think it is somehow linked to mental illness (it isn’t), or someone’s fault (wrong), or is related to mental retardation (usually not), or is even a sign of spiritual possession (an old myth that still lingers). Helping other family members understand the true nature of epilepsy as a medical condition affecting brain function will set these fears at rest. Your commitment to helping your child live as normally and actively as his or her condition permits, and to treat your child as much as possible just like any other child, will guide their response as well.
• Building self-esteem: One of the biggest challenges for parents when a child has seizures is to help the child maintain self esteem. Studies comparing children with epilepsy with children who have other chronic health conditions, such as asthma or diabetes, show that having seizures has a more negative effect on how children feel about themselves. The way parents feel about the epilepsy also affects how the child feels. Families that are open and accepting, and that help the child build on strengths, can make a positive difference in the child’s life.
• How parents can help:
• Emphasize the positive; praise success.
• Build on things the child likes and can do.
• Avoid describing the child’s seizures or the financial burden of medical care as problems in front of the child.
• Encourage a special hobby or lessons to acquire a special skill. Discuss seizures and epilepsy openly with the child and answer his or her questions about it.
• Encourage the child to be active and to have as much social contact with other children as possible.
• Try not to make your child’s seizures a reason not to do things the family would otherwise do.
• Take some time for yourself without feeling guilty about it. • Your child at school: Having seizures at school can be socially damaging to a child and frightening to others. However, it doesn’t have to be. A well-informed, confident teacher and a supportive school nurse and school administration can make all the difference in the world. There are several steps parents can take to create a more accepting school environment for a child.
• Meeting the teacher: First, take time to meet with your child’s teacher before the beginning of each school year to discuss how epilepsy affects your child, what type of seizures he or she has, and how you would like the teacher to handle the seizures when they occur. Since seizures are a common problem, many teachers will have had other students with epilepsy. If your child’s teacher is unfamiliar with seizures and would like information about them, contact your local Epilepsy Foundation. Videos, pamphlets and first aid presentations available from the Epilepsy Foundation have a basic message: that students with seizures belong in school and are in no way any kind of threat to other children. With information, reassurance, and plenty of opportunities to ask questions, other children can also learn to take seizures in stride and continue to accept the child who has them. But gaining acceptance is not the only challenge for children with seizures.
• Achievement: While many children with epilepsy test within the same range as other children, and are quite normal and healthy, their achievement at school may be lower. There may be several reasons for this, including side effects from the medication, days spent out of school for tests or doctor visits, and anxiety about having seizures at school. Memory or attention may also be affected. After a seizure a child may be unable to remember anything that happened the previous day or immediately afterwards. Testing for learning disabilities may reveal specific difficulties related to where the seizures are occurring in the child’s brain.
• Special planning: Some children with epilepsy will need specialized planning, with goals and objectives carefully spelled out, developed in partnership between the parent and the school. School activities should be open to all children, including children with seizures. Various federal laws (Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act and the Americans with Disabilities Act) and state laws protect children with disabilities from discrimination on the basis of disability.
• Dealing with risk: A seizure that ends normally after a minute or two is usually not hazardous to a child who has epilepsy. However, risks increase when the seizure happens near water, at heights, near traffic, or in any setting in which sudden loss of awareness could be dangerous. Parents naturally want to protect a child who has this extra level of risk on top of all the other risks that accompany a normal childhood. However, excessive concern about risk may isolate children with epilepsy from others and reduce social interaction. The following information may help you strike a balance.
• Water safety: Water can be a hazard to children with seizures, whether it is in a swimming pool, at the beach, or in the bathtub.
• Supervise young children closely during tub baths.
• Have older children take showers, not tub baths.
• Set water temperature low so a child won’t be scalded if consciousness is lost while hot water is running.
• Hang bathroom doors so they open outwards, and remove locks.
• Make sure shower and bath drains run quickly and are unobstructed.
• Swimming: A child with epilepsy — or any child — should never swim alone, or be on a boat or close to water (including backyard wading pools) without a flotation device or life jacket. If a child has a seizure in water, he or she should be checked by a lifeguard or parent. If there is any possibility that water has been swallowed or breathed into the lungs, get a medical check up.
• Carefully supervise children near water.
• Make sure an adult is present who knows your child has epilepsy and is a good enough swimmer to help if your child has a seizure in the water.
• Tell lifeguards or swimming instructors at local pools or beaches that your child has seizures.
• Other sports: Unless your child’s doctor recommends otherwise, sports activities and other exercise are as beneficial to a child with epilepsy as they are to any other child. In general, school sports activities and gym should be open to all children, including children with seizures. Safety measures such as harnesses, shock absorbing mats and adult supervision should reduce risks. Coaches and other officials should be aware that a child has seizures, and how the parents want them to be managed. Wearing safety helmets when riding a bicycle, or for sports where head injury is possible, should reduce risk.
• Discipline: Ignoring behavior you don’t like (so long as no one is likely to get hurt by it) and rewarding good behavior is as likely to work for children with epilepsy as it is for other children. However, parents often worry that discipline or emotional upset because of a wish that is not being granted will cause a seizure. They may be tempted to give in to unreasonable demands from a child with epilepsy because of that natural concern. If this is something that happens in your family, ask your doctor about the level of risk for your child and how you can exert discipline in a way that is safe and reasonable.
• Informing relatives: Informed, understanding relatives are a wonderful source of strength when a child has epilepsy. Others may have beliefs about this condition that hail from an earlier time. They may think it is somehow linked to mental illness (it isn’t), or someone’s fault (wrong), or is related to mental retardation (usually not), or is even a sign of spiritual possession (an old myth that still lingers). Helping other family members understand the true nature of epilepsy as a medical condition affecting brain function will set these fears at rest. Your commitment to helping your child live as normally and actively as his or her condition permits, and to treat your child as much as possible just like any other child, will guide their response as well.
• Building self-esteem: One of the biggest challenges for parents when a child has seizures is to help the child maintain self esteem. Studies comparing children with epilepsy with children who have other chronic health conditions, such as asthma or diabetes, show that having seizures has a more negative effect on how children feel about themselves. The way parents feel about the epilepsy also affects how the child feels. Families that are open and accepting, and that help the child build on strengths, can make a positive difference in the child’s life.
• How parents can help:
• Emphasize the positive; praise success.
• Build on things the child likes and can do.
• Avoid describing the child’s seizures or the financial burden of medical care as problems in front of the child.
• Encourage a special hobby or lessons to acquire a special skill. Discuss seizures and epilepsy openly with the child and answer his or her questions about it.
• Encourage the child to be active and to have as much social contact with other children as possible.
• Try not to make your child’s seizures a reason not to do things the family would otherwise do.
• Take some time for yourself without feeling guilty about it. • Your child at school: Having seizures at school can be socially damaging to a child and frightening to others. However, it doesn’t have to be. A well-informed, confident teacher and a supportive school nurse and school administration can make all the difference in the world. There are several steps parents can take to create a more accepting school environment for a child.
• Meeting the teacher: First, take time to meet with your child’s teacher before the beginning of each school year to discuss how epilepsy affects your child, what type of seizures he or she has, and how you would like the teacher to handle the seizures when they occur. Since seizures are a common problem, many teachers will have had other students with epilepsy. If your child’s teacher is unfamiliar with seizures and would like information about them, contact your local Epilepsy Foundation. Videos, pamphlets and first aid presentations available from the Epilepsy Foundation have a basic message: that students with seizures belong in school and are in no way any kind of threat to other children. With information, reassurance, and plenty of opportunities to ask questions, other children can also learn to take seizures in stride and continue to accept the child who has them. But gaining acceptance is not the only challenge for children with seizures.
• Achievement: While many children with epilepsy test within the same range as other children, and are quite normal and healthy, their achievement at school may be lower. There may be several reasons for this, including side effects from the medication, days spent out of school for tests or doctor visits, and anxiety about having seizures at school. Memory or attention may also be affected. After a seizure a child may be unable to remember anything that happened the previous day or immediately afterwards. Testing for learning disabilities may reveal specific difficulties related to where the seizures are occurring in the child’s brain.
• Special planning: Some children with epilepsy will need specialized planning, with goals and objectives carefully spelled out, developed in partnership between the parent and the school. School activities should be open to all children, including children with seizures. Various federal laws (Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act and the Americans with Disabilities Act) and state laws protect children with disabilities from discrimination on the basis of disability.
• Dealing with risk: A seizure that ends normally after a minute or two is usually not hazardous to a child who has epilepsy. However, risks increase when the seizure happens near water, at heights, near traffic, or in any setting in which sudden loss of awareness could be dangerous. Parents naturally want to protect a child who has this extra level of risk on top of all the other risks that accompany a normal childhood. However, excessive concern about risk may isolate children with epilepsy from others and reduce social interaction. The following information may help you strike a balance.
• Water safety: Water can be a hazard to children with seizures, whether it is in a swimming pool, at the beach, or in the bathtub.
• Supervise young children closely during tub baths.
• Have older children take showers, not tub baths.
• Set water temperature low so a child won’t be scalded if consciousness is lost while hot water is running.
• Hang bathroom doors so they open outwards, and remove locks.
• Make sure shower and bath drains run quickly and are unobstructed.
• Swimming: A child with epilepsy — or any child — should never swim alone, or be on a boat or close to water (including backyard wading pools) without a flotation device or life jacket. If a child has a seizure in water, he or she should be checked by a lifeguard or parent. If there is any possibility that water has been swallowed or breathed into the lungs, get a medical check up.
• Carefully supervise children near water.
• Make sure an adult is present who knows your child has epilepsy and is a good enough swimmer to help if your child has a seizure in the water.
• Tell lifeguards or swimming instructors at local pools or beaches that your child has seizures.
• Other sports: Unless your child’s doctor recommends otherwise, sports activities and other exercise are as beneficial to a child with epilepsy as they are to any other child. In general, school sports activities and gym should be open to all children, including children with seizures. Safety measures such as harnesses, shock absorbing mats and adult supervision should reduce risks. Coaches and other officials should be aware that a child has seizures, and how the parents want them to be managed. Wearing safety helmets when riding a bicycle, or for sports where head injury is possible, should reduce risk.
For Kids
• Epilepsy is a condition that affects the brain.** It can cause sudden bursts of activity in the brain, which lead to seizures. **Seizures happen when the brain's signals get mixed up,** kind of like when a TV has static and the picture flickers. People with epilepsy have seizures more than once, and doctors diagnose it if someone has **two or more seizures that don’t have an obvious cause** (like an injury). Not all seizures mean someone has epilepsy—sometimes they happen because of a head injury or even because of something inherited from family. Doctors don’t always know why epilepsy happens. **The word “epilepsy” just means “seizure disorder,”** and doesn’t tell us how serious it is or what caused it.
• A seizure happens when the brain suddenly sends out too many signals at once.** Think of it like a power surge in your house—lights might flicker or appliances might act strangely. When this happens in the brain, it can cause changes in how a person moves, feels, or acts. Seizures can look different for everyone. Some people might fall or shake, while others might stare into space or seem confused for a moment. Anyone’s brain can have a seizure, but people with epilepsy have them more often because their brains are more likely to have these "power surges." It’s important to know that having one seizure doesn’t always mean someone has epilepsy. Sometimes seizures happen because of other health issues, like a head injury or a high fever. Epilepsy means a person has had multiple seizures without an obvious cause.
• Epilepsy happens because the brain sometimes sends out mixed-up signals. Think of your brain like a giant control center that helps you move, think, and feel. Normally, it sends messages smoothly, like a steady drumbeat. But for people with epilepsy, sometimes the signals rush all at once, kind of like too many lights turning on at the same time in a house. This can cause a seizure. Doctors don’t always know exactly why someone has epilepsy. Sometimes it's because of a past head injury, or it might run in a family. Other times, it's just something a person is born with. But even though the brain sends mixed signals sometimes, **you can still do amazing things and live a full, happy life.** Doctors and medicine can help make seizures happen less often, and there are lots of people who understand and want to help.
• Most people with epilepsy can stop having seizures if they get the right treatment. About 6 out of 10 people with epilepsy will become seizure-free within a few years. Some will never have another seizure again! Others might still have seizures once in a while, or may feel side effects from their medicine. A smaller group has uncontrolled epilepsy, which means their seizures happen no matter what they try. Even though epilepsy can be tough, many people find the right treatment and live normal, happy lives!
• What Happens in the First Year?
• About 5 or 6 out of every 10 people with epilepsy stop having seizures after trying their first medicine.
• A second medicine might help 1 or 2 more out of 10 people get better.
• Some people still have seizures even after trying medicine, and doctors work hard to find other ways to help them.
• For kids with epilepsy, about 74 out of 100 will stop having seizures within two years of treatment.
• Only about 9 out of 100 kids will continue having uncontrolled seizures after many years.
• What About Later in Life?
• Most people—about 6 or 7 out of every 10—get better over time.
• But some people—about 3 out of 10—still have seizures they can’t control.
• Around half of people with epilepsy feel side effects from their medicine, like feeling tired or dizzy. Doctors work to help manage this.
• Kids with epilepsy can still play sports and do fun activities, but each person is different. Some kids have more seizures, while others may have them only sometimes. Even though epilepsy means taking extra care, there are lots of ways to stay active and have fun. Doctors and parents think about a few things when choosing the right activities:
• How often do the seizures happen? Some kids have seizures a lot, while others rarely do.
• Does the medicine cause side effects? Some medicines make kids feel sleepy or dizzy, so certain activities might be harder.
• Are there other health problems? Some kids have other medical conditions that can affect what activities they can do.
• Can the child follow safety rules? It's important to listen to instructions and be responsible.
• What kind of activity is it? Some sports, like swimming, need extra supervision to keep kids safe.
• Are there safety precautions? Wearing helmets, having a buddy, or making sure an adult is nearby can help prevent injuries.
• Why is exercise important? Moving and playing keeps kids healthy and happy!
• Schools have special training to help teachers, nurses, and coaches understand epilepsy and seizures. This training helps schools take care of students with epilepsy and make sure they can learn and play just like everyone else. This training teaches school staff:
• What epilepsy is and how seizures happen.
• What to do if a student has a seizure at school.
• How to give first aid and keep kids safe.
• What a seizure action plan is and why it's important.
• What medicines or treatments might be needed during a seizure emergency.
• How to support students in class so they feel included and safe.
• What epilepsy is and how seizures happen.
• What to do if a student has a seizure at school.
• How to give first aid and keep kids safe.
• What a seizure action plan is and why it's important.
• What medicines or treatments might be needed during a seizure emergency.
• How to support students in class so they feel included and safe.
• No, epilepsy is not something you can catch like a cold or the flu. It’s not caused by germs, so you can’t pass it to your friends by being around them, sharing food, or playing together. Epilepsy happens when the brain sends mixed-up signals, and that’s something that just happens to some people—but it’s not contagious. You don’t have to worry about spreading it, and your friends don’t need to be afraid of being near you.
• When you start taking seizure medicine, your body needs time to get used to it. Some kids feel tired, dizzy, or have an upset stomach in the first few weeks. Others might notice their vision gets a little blurry. The good news is that not everyone feels these side effects, and even if they do, they often go away after a few weeks or months. Doctors usually start with a small dose and slowly increase it to help your body adjust better. Every seizure medicine is different, so side effects can change depending on what you take. If you’re worried about how your medicine makes you feel, talk to your doctor. Just because some side effects are common doesn’t mean you’ll have them—many kids feel totally fine!
• Yes, it can! Sleep is really important for the brain, and missing out on it can make seizures more likely to happen. Some people have their first seizure after staying up all night, like cramming for a test or playing video games too late. For people with epilepsy, not getting enough good sleep can make their seizures happen more often, last longer, or feel stronger. Some types of epilepsy are even more sensitive to sleep problems, meaning missing sleep can affect them more than others. Getting plenty of rest helps keep the brain working well and can lower the chance of seizures.
• No, epilepsy won’t stop you from doing most things when you grow up! People with epilepsy can have jobs, go to college, play sports, and do almost everything that other people do. Some careers, like being a pilot, have special rules about epilepsy.
• Can You Be a Pilot with Epilepsy? The Federal Aviation Administration (FAA) has strict rules for pilots. Right now, people with epilepsy can’t get a pilot’s license unless they have been seizure-free for at least 10 years without medication. This is because pilots need to stay fully alert and in control while flying.
• What About Other Jobs? Most jobs don’t have rules against epilepsy, and many people with epilepsy work in all kinds of careers—doctors, teachers, artists, engineers, and more! Some jobs might have safety rules, like working with heavy machinery, but there are always ways to find a career that fits you.
• Can You Still Have Fun? Yes! You can still play sports, travel, drive (if your seizures are controlled), and do exciting things. Epilepsy doesn’t define you—it’s just one part of who you are. With the right treatment and support, you can live a full and happy life.
• Can You Be a Pilot with Epilepsy? The Federal Aviation Administration (FAA) has strict rules for pilots. Right now, people with epilepsy can’t get a pilot’s license unless they have been seizure-free for at least 10 years without medication. This is because pilots need to stay fully alert and in control while flying.
• What About Other Jobs? Most jobs don’t have rules against epilepsy, and many people with epilepsy work in all kinds of careers—doctors, teachers, artists, engineers, and more! Some jobs might have safety rules, like working with heavy machinery, but there are always ways to find a career that fits you.
• Can You Still Have Fun? Yes! You can still play sports, travel, drive (if your seizures are controlled), and do exciting things. Epilepsy doesn’t define you—it’s just one part of who you are. With the right treatment and support, you can live a full and happy life.
Epilepsy is a condition that affects my brain. Sometimes, my brain sends out mixed signals, kind of like a glitch in a video game. When this happens, I might have a seizure, which means my body could shake, I might stare into space, or act differently for a short time. It’s not something you can catch, and it doesn’t mean I’m sick—it just means my brain works a little differently sometimes. If I ever have a seizure, don’t worry! Just stay calm and make sure I’m safe, and it will pass." This helps your friends understand that epilepsy isn’t scary and that you’re still just like them!
• If you have epilepsy, taking your medicine on time is really important! Missing a dose can make seizures happen more often, last longer, or feel stronger. One serious kind of seizure is called status epilepticus—this means a seizure doesn’t stop and can be dangerous. If this happens, a person might need emergency help right away. Skipping medicine can also cause falls, injuries, and other health problems. That’s why it’s important to take your medicine exactly as your doctor tells you—it helps keep your brain working the way it should and lowers the chances of seizures.
• If someone has a seizure, the most important thing is to stay calm and help keep them safe. Seizures might look scary, but most end on their own in a couple of minutes. If you know someone with epilepsy, asking their parents or teachers what to do in an emergency can help you feel ready. Here’s what you should do:
• Stay with them. Don’t leave them alone—stay nearby and let an adult know.
• Move dangerous objects away. If they’re near something hard or sharp, gently move it so they don’t get hurt.
• Help them lie on their side. This keeps them from choking.
• Don’t put anything in their mouth. They won’t swallow their tongue, and putting something in their mouth can hurt them.
• Don’t hold them down. If they’re shaking, let their body move freely until the seizure ends.
• Time the seizure. If it lasts more than 5 minutes, or if they have another seizure right after, call for emergency help.
• After the seizure, talk to them. They might be confused or tired—help them feel safe and let them rest.
• Stay with them. Don’t leave them alone—stay nearby and let an adult know.
• Move dangerous objects away. If they’re near something hard or sharp, gently move it so they don’t get hurt.
• Help them lie on their side. This keeps them from choking.
• Don’t put anything in their mouth. They won’t swallow their tongue, and putting something in their mouth can hurt them.
• Don’t hold them down. If they’re shaking, let their body move freely until the seizure ends.
• Time the seizure. If it lasts more than 5 minutes, or if they have another seizure right after, call for emergency help.
• After the seizure, talk to them. They might be confused or tired—help them feel safe and let them rest.
• Epilepsy itself doesn’t hurt your friend or sibling, but having a seizure can sometimes be dangerous if they fall or hit something hard. Most seizures stop on their own and don’t cause lasting harm. But sometimes, if a seizure goes on for a long time or happens again right away, it can be serious and they might need emergency help. The best way to keep them safe is to learn what to do during a seizure. If you know how to help, you can make sure they don’t get hurt and they’ll be okay when the seizure ends.
• Epilepsy is different for everyone. Some people stop having seizures completely, especially if they find the right medicine or treatment. Others may still have seizures, but they happen less often or aren’t as strong. For some people, epilepsy lasts their whole life, but that doesn’t mean they can’t do normal things. Doctors work really hard to help people with epilepsy find ways to control their seizures. Even if your friend or sibling keeps having seizures, they can still do fun things, go to school, and have a great life. Being supportive and understanding is one of the best ways you can help!
• Seizures happen when the brain sends out too many signals all at once, kind of like a power surge in a house. Normally, your brain helps control everything you do—moving, thinking, feeling—but during a seizure, the signals get mixed up or overloaded. This can make a person fall, shake, stare into space, or act differently for a short time. Seizures can be caused by epilepsy, but sometimes they happen because of a fever, a head injury, or something else. Even though seizures look scary, most don’t last long and go away on their own. Doctors help people with epilepsy by using medicine and other treatments to lower the chance of seizures.
• Yes! Having epilepsy doesn’t mean your friend or sibling can’t do fun things. They can still play, go to school, hang out with friends, and do most of the same activities as everyone else! Some activities might need extra safety steps, like having an adult nearby for swimming or wearing a helmet for biking. But as long as they follow their doctor’s advice and stay safe, they can live a happy, active life just like you!
• Yes! Some things can make seizures happen more often or feel stronger. If someone has epilepsy, it's important to know what might trigger a seizure. Not everyone with epilepsy has the same triggers, but paying attention to what makes seizures happen can help people stay safe. Here are a few common things that can make seizures worse:
• Skipping medicine – If they forget to take their seizure medicine, it can make seizures more likely.
• Not getting enough sleep – The brain needs rest, and staying up too late can make seizures more common.
• Stress or feeling overwhelmed – Worrying a lot or feeling upset can sometimes trigger a seizure.
• Bright or flashing lights – Some people are sensitive to flashing lights, like strobe lights or certain video games.
• Getting sick or having a fever – Illnesses can make seizures more likely, especially in kids.
• Certain foods or drinks – Too much caffeine (like energy drinks or coffee) can sometimes make seizures worse.
• Too much excitement or overstimulation – Loud noises or big surprises can trigger seizures in some people.
• Skipping medicine – If they forget to take their seizure medicine, it can make seizures more likely.
• Not getting enough sleep – The brain needs rest, and staying up too late can make seizures more common.
• Stress or feeling overwhelmed – Worrying a lot or feeling upset can sometimes trigger a seizure.
• Bright or flashing lights – Some people are sensitive to flashing lights, like strobe lights or certain video games.
• Getting sick or having a fever – Illnesses can make seizures more likely, especially in kids.
• Certain foods or drinks – Too much caffeine (like energy drinks or coffee) can sometimes make seizures worse.
• Too much excitement or overstimulation – Loud noises or big surprises can trigger seizures in some people.
• Helping your friend or sibling feel safe with epilepsy is all about being supportive and understanding. Letting them know you care and being there when they need help makes a big difference. Here’s how you can help:
• Learn about epilepsy – The more you know, the easier it is to help them.
• Stay calm during a seizure – If they have one, don’t panic. Just make sure they’re safe and let an adult know.
• Remind them they’re just like everyone else – Epilepsy doesn’t change who they are!
• Help them avoid seizure triggers – If you know what makes their seizures worse, you can help them make safe choices.
• Be a good friend – Encourage them, include them in activities, and listen if they want to talk about how they feel.
• Learn about epilepsy – The more you know, the easier it is to help them.
• Stay calm during a seizure – If they have one, don’t panic. Just make sure they’re safe and let an adult know.
• Remind them they’re just like everyone else – Epilepsy doesn’t change who they are!
• Help them avoid seizure triggers – If you know what makes their seizures worse, you can help them make safe choices.
• Be a good friend – Encourage them, include them in activities, and listen if they want to talk about how they feel.
• Totally! It is okay to ask questions—as long as you're being kind and respectful. Imagine if you had something going on in your life, like wearing glasses or dealing with allergies. You’d probably be fine with a friend asking about it—if they were being nice and really wanted to understand, right? The same goes for epilepsy. If your friend or sibling has it, they might be totally cool with talking about it, or they might feel shy or private. The best thing to do is ask in a gentle way, like, “Hey, is it okay if I ask you something about your epilepsy?” That way, they know you care and you're trying to learn, not tease. Being curious is a great thing—it helps you be a better friend, sibling, and human. Just remember: kindness first, always.
• Having epilepsy doesn't make someone less of a kid or a person—it just means their brain works a little differently sometimes. Everyone is different in their own way. Some kids are tall, some have freckles, some are super fast runners, and some need medicine or extra care because of things like asthma, diabetes… or epilepsy. Epilepsy just means their brain sometimes gets a little scrambled and causes seizures. But that doesn’t change who they are inside. They still laugh at jokes, play games, have favorite foods, and get mad when their siblings take the last cookie—just like anyone else! So while they might have to do a few things differently to stay safe, they’re still just a regular awesome kid, like you.
• Treat them like you always would—just with a little extra care when needed. If your friend or sibling has epilepsy, they might not be able to do every single thing all the time—like going to places with flashing lights or playing certain sports—but that doesn't mean they want to sit out or be forgotten. Being there, being kind, and being cool about it—that’s what makes someone an awesome friend or sibling. Here are some simple ways to help them feel included:
• Invite them, even if you're not sure they can join. Let them decide! Feeling wanted means everything.
• Be flexible. If something won’t work for them, maybe the group can find an activity everyone can enjoy. Movie night instead of laser tag? Yes, please.
• Speak up for them. If someone’s being rude or doesn’t understand epilepsy, you can help explain or just be there for your friend.
• Listen. Ask how they’re feeling and what they’re comfortable with—it shows you care, and that’s a big deal.
• Invite them, even if you're not sure they can join. Let them decide! Feeling wanted means everything.
• Be flexible. If something won’t work for them, maybe the group can find an activity everyone can enjoy. Movie night instead of laser tag? Yes, please.
• Speak up for them. If someone’s being rude or doesn’t understand epilepsy, you can help explain or just be there for your friend.
• Listen. Ask how they’re feeling and what they’re comfortable with—it shows you care, and that’s a big deal.
For Seniors
• If you are a senior citizen, you can probably remember a time when there were no reliable treatments for epilepsy. People did not understand why seizures happened and they were afraid of them. You may remember, as a child, that families often sent people with seizures off to institutions, or kept them at home, isolated from others.
• Photosensitivity and seizures: If you are a senior citizen, you can probably remember a time when there were no reliable treatments for epilepsy. People did not understand why seizures happened and they were afraid of them. You may remember, as a child, that families often sent people with seizures off to institutions, or kept them at home, isolated from others. And you may have heard it whispered (incorrectly) that epilepsy is a form of mental illness. Find out more about how perceptions have changed.
• Seizures in later life: When people in their sixties, seventies, or eighties experience unusual feelings — lost time, suspended awareness, confusion, seizures — they may think their symptoms are caused by some of the physical or mental problems that sometimes accompany aging. But there may be another explanation for what is happening: they may have become one of the 300,000 American senior citizens with epilepsy. For a long time epilepsy has been seen as a condition that affects young people, often starting in early childhood; sometimes lasting throughout life. But now we know it can affect anyone at any age. In fact, a careful look at the statistics shows us that it’s as likely to begin in the sixties, seventies and eighties as it is during the first ten years of life. Having epilepsy at any time of life takes some getting used to. People want to find out about the disorder, how it’s treated, and what kinds of changes it may make in their lives.
• Epilepsy in the elderly: Currently affects about 300,000 seniors nationwide; most rapidly growing population group with epilepsy. Causes include after-effects of stroke, tumor, or cardiovascular events. Poses more difficult problems in treatment because of age-related issues and use of other medications. Increases risk of falls, broken bones, loss of independence.
• Photosensitivity and seizures: If you are a senior citizen, you can probably remember a time when there were no reliable treatments for epilepsy. People did not understand why seizures happened and they were afraid of them. You may remember, as a child, that families often sent people with seizures off to institutions, or kept them at home, isolated from others. And you may have heard it whispered (incorrectly) that epilepsy is a form of mental illness. Find out more about how perceptions have changed.
• Seizures in later life: When people in their sixties, seventies, or eighties experience unusual feelings — lost time, suspended awareness, confusion, seizures — they may think their symptoms are caused by some of the physical or mental problems that sometimes accompany aging. But there may be another explanation for what is happening: they may have become one of the 300,000 American senior citizens with epilepsy. For a long time epilepsy has been seen as a condition that affects young people, often starting in early childhood; sometimes lasting throughout life. But now we know it can affect anyone at any age. In fact, a careful look at the statistics shows us that it’s as likely to begin in the sixties, seventies and eighties as it is during the first ten years of life. Having epilepsy at any time of life takes some getting used to. People want to find out about the disorder, how it’s treated, and what kinds of changes it may make in their lives.
• Epilepsy in the elderly: Currently affects about 300,000 seniors nationwide; most rapidly growing population group with epilepsy. Causes include after-effects of stroke, tumor, or cardiovascular events. Poses more difficult problems in treatment because of age-related issues and use of other medications. Increases risk of falls, broken bones, loss of independence.
• Epilepsy is a functional disorder of the brain, a kind of occasional glitch in the amazing electrical system which controls everything we feel and do. These brief malfunctions (which are called seizures) may temporarily block awareness. They can also cause uncontrollable shaking, convulsions, confusion, or affect the senses. Anyone at any age can have a seizure if the brain is stressed sufficiently by injury or disease. A single seizure isn’t epilepsy, although the symptoms are the same. Epilepsy is the name given to seizures that occur more than once because of an underlying condition in the brain.
• Although there are always exceptions, senior citizens with epilepsy who are otherwise in good health and whose mental abilities are unaffected can usually continue to live independently. Families may find this idea difficult to accept. With the best of intentions, they often become overprotective, making an older relative more dependent than is necessary.
• Seizure causes are identifiable for about 50 percent of seniors, but just as in younger people, the types of seizures vary. Treatment in seniors, often made more difficult because of age-related issues and other medications, varies, although medication and surgery are the most common forms of treatment.
For Men
• Epilepsy is the fourth most common neurological disorder in the world. If you have epilepsy, surges of electrical activity in your brain can cause recurring seizures. We can help you understand everything you need to know about epilepsy and what you can do about it. Epilepsy is a brain disorder that causes recurring, unprovoked seizures. Your doctor may diagnose you with epilepsy if you have two unprovoked seizures or one unprovoked seizure with a high risk of more. Not all seizures are the result of epilepsy. Seizures may relate to a brain injury or a family trait, but often the cause is completely unknown. The word "epilepsy" simply means the same thing as "seizure disorders." It does not state anything about the cause of the person's seizures or their severity.
• Seizures are sudden surges of abnormal and excessive electrical activity in your brain and can affect how you appear or act. Where and how the seizure presents itself can have profound effects. Having seizures and epilepsy can affect your safety, relationships, work, driving, and so much more. You need to recognize the patterns and situations when seizures are more likely to occur. Not all seizures are the same. Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well.
• There is no evidence that epilepsy per se causes low self-esteem. However, recent research suggests that people with epilepsy sometimes have difficulty forming relationships with others, possibly due to neurological damage to the temporal lobe. One study of patients with poorly controlled epilepsy found that 68 percent of subjects had no personal friends. People who lack the social support that friendships offer are likely to feel isolated; subsequently, these feelings of isolation may have a negative impact on self-esteem.
Experts also cite other possible reasons why people with epilepsy are prone to low self-esteem: family over-protection, which prevents individuals from developing independence and self-esteem; the perceived stigma that accompanies epilepsy and resultant negative self-image; and general personal dissatisfaction.
• Low self-esteem in males with epilepsy (MWE) is particularly common during adolescence, a period of heightened self-consciousness that may be exacerbated by having epilepsy. Surveys indicate that adolescents whose epilepsy is well-controlled are less likely to suffer from low self-esteem than those who have frequent seizures.
• Low self-esteem can result in general dissatisfaction. It can also adversely affect specific aspects of life. For instance, low self-esteem may contribute to sexual problems, such as decreased libido. Low self-esteem may also be partially responsible for under-employment among MWE. A recent report by the Epilepsy Foundation documented that people with epilepsy have an unemployment rate of 25 percent. Among people whose seizures are poorly controlled, that rate approaches 50 percent.
• Low self-esteem in males with epilepsy (MWE) is particularly common during adolescence, a period of heightened self-consciousness that may be exacerbated by having epilepsy. Surveys indicate that adolescents whose epilepsy is well-controlled are less likely to suffer from low self-esteem than those who have frequent seizures.
• Low self-esteem can result in general dissatisfaction. It can also adversely affect specific aspects of life. For instance, low self-esteem may contribute to sexual problems, such as decreased libido. Low self-esteem may also be partially responsible for under-employment among MWE. A recent report by the Epilepsy Foundation documented that people with epilepsy have an unemployment rate of 25 percent. Among people whose seizures are poorly controlled, that rate approaches 50 percent.
• Controlling Epilepsy: Controlling epilepsy may help improve self-esteem. One study found that in children with epilepsy who successfully underwent surgery, it not only alleviated seizures at a younger age, but also improved the psychosocial status of these individuals later in life.
• Support Groups: Group interventions have proved beneficial as self-esteem boosters. For instance, a recent study demonstrated how adolescents with epilepsy benefited from a 6-week, structured psycho- educational group intervention. The intervention involved cognitive-behavioral strategies in which participants were encouraged to share their own experiences. Results showed that the intervention helped participants better understand their disease and engage in peer support. Post-intervention outcome measurements indicated an overall positive trend for quality of life improvement, suggesting that support groups would benefit MWE suffering from low self-esteem.
• Stress Management: Stress management has been linked to improvements in self-esteem and seizure control. Recent research indicates that, by increasing self-esteem, MWE may be able to manage stressful situations more effectively. Moreover, studies indicate that stress management may lead to improved seizure control in some MWE. Therefore, MWE who suffer from low self-esteem and anxiety may benefit by learning and practicing relaxation techniques. Examples of these techniques include aromatherapy, tai chi, reflexology and meditation.
• Seeking Professional Help: If feelings of low self-esteem persist for a prolonged period of time or interfere with daily living, it is advisable to seek help from a trained professional, such as a clinical psychologist or a qualified counselor. A referral can be obtained through a primary care provider.
• Support Groups: Group interventions have proved beneficial as self-esteem boosters. For instance, a recent study demonstrated how adolescents with epilepsy benefited from a 6-week, structured psycho- educational group intervention. The intervention involved cognitive-behavioral strategies in which participants were encouraged to share their own experiences. Results showed that the intervention helped participants better understand their disease and engage in peer support. Post-intervention outcome measurements indicated an overall positive trend for quality of life improvement, suggesting that support groups would benefit MWE suffering from low self-esteem.
• Stress Management: Stress management has been linked to improvements in self-esteem and seizure control. Recent research indicates that, by increasing self-esteem, MWE may be able to manage stressful situations more effectively. Moreover, studies indicate that stress management may lead to improved seizure control in some MWE. Therefore, MWE who suffer from low self-esteem and anxiety may benefit by learning and practicing relaxation techniques. Examples of these techniques include aromatherapy, tai chi, reflexology and meditation.
• Seeking Professional Help: If feelings of low self-esteem persist for a prolonged period of time or interfere with daily living, it is advisable to seek help from a trained professional, such as a clinical psychologist or a qualified counselor. A referral can be obtained through a primary care provider.
