Do people with epilepsy have problems socially? Does it affect them psychologically?
Epilepsy is a chronic disorder that may affect how you feel about yourself and your relationship with other people, such as family, friends, or co-workers. It does not automatically mean problems although anyone can have emotional difficulties with self-esteem or relationships. People with epilepsy may be embarrassed or fearful about their seizures and they may have to content with the ignorance and fear of other people. Some people work through these issues on their own, and others may need some help from a nurse or a professional counselor to deal with them effectively.
When should I tell people about my seizures?
It’s your decision when, or if, you tell people about your epilepsy. It is probably difficult to keep this a secret from close friends or people you spend a lot of time with. People can be frightened of situations they don’t understand or anticipate. Most good friends will be supportive and understanding about your seizures and they may be interested in learning more about epilepsy. However, you may choose not to confide in casual acquaintances, just as you would not share other personal information with them.
How do I tell other people about my epilepsy?
Have a positive attitude about yourself — epilepsy is only a part of who you are, and nothing to be ashamed of. Whenever possible, choose a comfortable place and enough time to keep you from feeling anxious or rushed when you talk about your seizures. It may help to have written material available about epilepsy to share. You can contact the Epilepsy Foundation or your local affiliate for further information.
I'm really nervous about telling my boyfriend about my seizures. I'm afraid he will be scared off.
It may be especially important to tell your boyfriend about your seizure disorder so there won’t be any unexpected surprises. Keep a positive attitude about yourself and epilepsy, and he probably will, too. If you need moral support, ask a family member or friend who knows about your seizures, or your physician, to help explain the facts to your boyfriend. Remember that intimate relationships are complicated and may have problems for many reasons. Women without epilepsy struggle with these issues, too.
People say I have mood swings. Can my personality be affected by epilepsy or my medication?
That is a complex question. Mood and personality are affected by many factors. Certain kinds of seizure disorders (those that originate in the temporal lobe of the brain, for instance) appear to affect mood and behavior during an actual seizure episode, and even an aura may change your behavior patterns. But seizures (and auras) are intermittent events and it is not clear how epilepsy affects general personality traits. Some physicians used to refer to the “epileptic personality,” implying that all people with seizures shared certain behavioral characteristics. We now recognize that people with epilepsy have a variety of personality traits, positive and negative, just as people without epilepsy do.
I feel like epilepsy keeps me from leading a normal life
It’s understandable that you feel that way. Epilepsy does interfere with certain aspects of life for most people who have seizures. Taking medication daily, having regular blood tests, or keeping seizure records is time consuming and a frequent reminder of a chronic disorder. For some people, there are more difficult restrictions, such as inability to drive or make certain career choices.
Can I have a normal sexual relationship even though I have seizures? Can I get married and have children?
Yes, you can. Sexual relationships are a normal part of healthy living, and people with seizures fall in love and marry just like anyone else. Women with epilepsy get pregnant and most of them have normal, healthy babies. You may experience some specific problems associated with seizure disorders that can interfere with sexual expression and there are some concerns related to seizure control, certain medications and other significant issues that are important to discuss with your doctor before you become pregnant. For more detailed information on these subjects, see Epilepsy and Sexual Relationships and Pregnancy Issues.
My doctor thinks I am overly concerned about my seizures, I just get the brush off.
My doctor told me that because I need to take antiepileptic medication, I should never get pregnant. Now that I am pregnant he recommends an abortion, but I want my baby. Am I wrong to think that my baby will be okay?
For women who have epilepsy, the risk of having a baby with a birth defect is double the risk for women in the general population. Any woman, whether she has epilepsy or not, has a two to three percent chance of having a baby with a birth defect. For women with epilepsy, the risk is four to eight percent. Even so, mothers with seizures have a better than 90 percent chance of having a normal, healthy baby.
Is there anyway to be sure that I dont get pregnant?
All available birth control methods can be used by persons with epilepsy. These include:
How do I know which method is best for me?
You need to work with your gynecologist and your neurologist to choose the birth control method that is most appropriate for you. It is possible that your antiepileptic drug (AED) may make your hormonal birth control less reliable, resulting in an unwanted pregnancy. You and your physicians may consider different combinations of hormonal birth control and seizure medications to find the one that works best for you.
How will my seizure medication affect my hormonal birth control?
There are complex interactions between the hormones (estrogen and progesterone) contained in birth control pills or devices, and some of the medications used to control seizures. Some of these medications increase the breakdown of contraceptive hormones in the body, making them less effective in preventing pregnancy. The seizure medications that have this effect are often called “liver enzyme-inducing” drugs because the liver is the organ that breaks down these hormones. They are carbamazepine (Tegretol, Carbatrol), oxcarbazepine (Trileptal), phenytoin (Dilantin), phenobarbital (Luminal), primidone (Mysoline), and topiramate (Topamax). Valproate (Depakote) and felbamate (Felbatol) do not increase breakdown of hormones, and may even increase hormonal levels, which may require an adjustment in the dose of your birth control. Gabapentin (Neurontin), lamotrigine (Lamictal), levetiracetam (Keppra), and tiagabine (Gabitril) have no effect on this system and do not interfere with the effectiveness of hormonal birth control.
Are there special concerns about "the pill" for women with epilpesy?
Yes, there are. The popular low-dose combined oral contraceptive pill has a relatively small amount of estrogen (less than 35 micrograms). That’s not enough to protect women with epilepsy who take enzyme-inducing AEDs from becoming pregnant. You may need contraceptive pills with higher doses of estrogen, and even then, there is a risk of unexpected pregnancy. It is a good idea to use barrier methods (a diaphragm, spermicidal cream or a condom) in addition to the contraceptive pill, if you are taking one of the seizure medications that speed up the breakdown of the hormones in birth control pills.
Are there problems with other forms of hormonal birth control?
Hormonal implants, like levonorgestrel (Norplant) which is placed under the skin, may not provide effective birth control protection if you are taking certain epilepsy drugs. The medications that cause the most problems with Norplant are the “liver enzyme-inducing” seizure medications such as carbamazepine (Tegretol, Carbatrol), oxcarbazepine (Trileptal), phenytoin (Dilantin), phenobarbital (Luminal), primidone (Mysoline), and topiramate (Topamax). These antiepileptic drugs increase the rate of breakdown of birth control hormones.
Are there any warning signals if my contraception is not working?
Breakthrough bleeding while you’re on hormonal contraception, for example during the middle of your cycle, could be a sign that you are ovulating and may become pregnant. If you are using birth control pills, bleeding at any other time than when you switch from the active to the inactive pills may indicate that the pills are not working. If bleeding occurs, ask your doctor to help you select an additional form of contraception such as a diaphragm, spermicidal vaginal cream, or condom. It is important for you to know that hormonal contraception can fail without signs of breakthrough bleeding.
Does it matter that my periods aren't regular?
Yes, because it may make hormonal birth control and timing methods more complicated. Usually, irregular menstrual cycles mean that hormones are out of balance in some way. It is important for your gynecologist and your neurologist to know if your periods are irregular so that they can help you choose the best method of contraception. It may be necessary to consult with an endocrinologist, a doctor who specializes in diagnosing and treating hormonal problems.
Will my seizure patterns change if I use hormonal birth control?
Current research does not indicate changes in seizure frequency when women with epilepsy use hormonal birth control, but individual reports suggest they may change. Some women have reported more seizures, some have reported less. If you notice a change in your seizure pattern when you use hormonal birth control, contact your physician.
Hormones and Epilepsy
What are hormones?
What do the sex hormones do?
Sex hormones have several functions. Primarily, they control and maintain our reproductive systems. They also have an influence on muscle mass, bone strength, emotions, and behavior. Sex hormones begin to influence brain function before birth, as early as a month or two after conception.
Is there a connection between seizures and hormones?
Yes, although we do not understand it very well. We know that the female hormones, estrogen and progesterone, act on certain brain cells, including those in the temporal lobe, a part of the brain where partial seizures often begin. Estrogen excites these brain cells and can make seizures more likely to happen. In contrast, natural progesterone can inhibit or prevent seizures in some women.
Are all seizures caused by hormone changes?
Hormones generally do not cause seizures but can influence their occurrence. Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations. For example, puberty is a time when hormones are stimulating body changes. It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time. Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods.
Why do I have seizures more often around the time of my menstural period?
This is a condition called “catamenial epilepsy,” and describes a tendency for increased seizures related to the menstrual cycle. In some women, seizures occur most frequently just before menstruation, during the first few days of menstruation and at mid-cycle, during ovulation. The causes of catamenial epilepsy are not understood very well. The balance between the two female sex hormones, estrogen and progesterone, may be disturbed, or you may not be producing enough progesterone during the second half of your menstrual cycle. It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.
Why do women with epislepy often have more reproductive disorders than women without seizures?
Women with seizures that start in the temporal lobes of the brain seem more likely to have reproductive disorders such as polycystic ovaries, early menopause, and irregular (or no) ovulation, than women in the general population. The temporal lobes are closely connected to, and communicate with, areas of the brain that regulate hormones (hypothalamus and pituitary gland.) Seizures in these areas may alter the normal production of hormones. Certain epilepsy medications seem to interfere with hormone regulation.
Why is it important to find out if hormones changes are involved in my seizures?
For both women and men, identifying hormonal influences on seizure patterns may lead to a better understanding of treatment options for seizure control. Women should keep a calendar of their menstrual cycles and of days they have seizures. It is important to keep track of other factors that may affect the menstrual cycle or seizure patterns, such as missed medication, loss of sleep, unusual fatigue, intense physical training, stress or an illness. Some women may find it helpful to keep track of the lowest body temperature of the day (taken each morning before getting out of bed, and before eating the first meal of the day). This helps to find out if you are ovulating regularly. Be sure to share these records with your doctor or the nurse who is helping you manage your seizures.
Do men have hormone-sensitive seizures also?
Hormonal changes in men are less obvious than in women because men do not have a monthly cycle. However, in men, hormones (testosterone and breakdown products) also influence brain function and may have an impact on seizures. More research is needed on hormones, seizures and sexual function in men with epilepsy — as it is needed in women with epilepsy.
How do I find out if I have hormone-related problems?
If you suspect that hormones play a role in your seizures, talk to your physician or the nurse who helps monitor your seizures. Blood tests of certain hormone levels and of your seizure medication may provide helpful information. Sometimes additional tests, such as a pelvic ultrasound, may be recommended to rule out other causes for menstrual irregularities.
I think my seizures have something to do with hormones? Should I see a specialist?
Most people who have well-controlled seizures are treated by a primary care doctor. But women who have special concerns about seizures and hormones need referral to a neurologist. A neurologist who specializes in seizures is called an epileptologist. A neuroendocrine specialist is a neurologist with training in hormone disorders and their effects on brain function. These physicians are usually found at hospitals or health care centers with programs devoted to epilepsy treatment, often called Comprehensive Epilepsy Center
Will my insurance cover the cost of seeing a specialist?
Talk to your primary care doctor first about your concerns and referral sources covered by your health insurance. Your local Epilepsy Foundation affiliate may have information about specialists in epilepsy care who can help you.
Genetics and Epilepsy
What is Genetics?
Genetics is the study of genes, which are the basic units of heredity. Human beings have many thousands of genes. Each of these genes influences certain traits such as hair color, eye color, blood type, and many other characteristics. People are different with regard to these traits because their genes are different. Children look similar to one or both parents, for example, or have traits similar to their grandparents and other relatives, because of certain genes which have been passed or inherited from one generation to the next.
I thought we inherited different traits because of our chromosomes. What is the difference between genes and chromosomes?
An easy way of thinking about a chromosome is as a “package” filled with many genes.
The human body is made up of millions of cells. There are many different types of cells such as brain cells, muscle cells, and skin cells. Most cells in the body contain chromosomes. Each of these cells holds 23 pairs of chromosomes (46 total). One member of each pair is inherited from the mother and the other from the father. Genes are located on chromosomes and, thus, are passed from both parents to the child.
That sounds so complicated. What if something goes wrong?
It is complicated. Genes can be altered in many ways. Changes in the DNA that cause a protein to not work normally or stop working altogether are called “mutations.” Environmental factors can also affect the way cells work. Some mutations may result in disease and some of these conditions can be passed on to future generations.
Is epilepsy inherited?
Some types of epilepsy are. Epilepsy is not a single disorder, but a collection of many disorders that all have in common the tendency to cause a person to have seizures. When individual characteristics are caused by single genes, they are called “simple” genetic traits. Only a few rare types of epilepsy are caused by alterations in single genes. Most seem to be caused by a complex interaction among multiple genes and environmental influences.
I'm pregnant and I have epilepsy. Is my baby likely to have seizures too?
Certain types of epilepsy do seem to run in families. Some studies have shown that the risk of epilepsy in brothers, sisters and children of people with seizure disorders ranges from 4-8% (that is, between about 1 in 25 and about 1 in 12). The risk in the general population is about 1-2% (between 1 in 100 and 1 in 50). However, it’s important to remember that although the risk is higher than in the general population, most people with epilepsy do not have any relatives with seizures, and the great majority of parents with epilepsy do not have children with epilepsy.
Which types of epilepsy are most likely to be inherited?
People who have a generalized epilepsy (one where the EEG pattern shows both sides of the brain involved at the beginning of a seizure) seem somewhat more likely to have other family members with seizures than those with a localization-related epilepsy (also called partial or focal, where the EEG pattern shows seizures beginning in a single area of the brain). Parents with a history of generalized absence (childhood petit mal) seizures are more likely to have children with the same condition than those with other generalized seizures or focal seizures.
What are some of the other factors that seem to be involved in inheritance?
1. Age when epilepsy begins — Children of people whose seizures started early in life (for example, before 20 years of age) have a greater risk of developing epilepsy than children of people whose seizures started later in life.
Can epilepsy skip a generation?
Yes, it can. As discussed earlier, most types of epilepsy are caused by multiple genes and environmental influences. Not everyone who carries genes that make him or her more likely to develop epilepsy will, in fact, do so. Therefore, even if the genes are passed on, not every generation in a family will have seizures.
How can I find out what the risk is for my baby to inherit my type of epilepsy?
Ask your physician to refer you for genetic counseling. Specially trained physicians or nurses, genetic counselors, and other health care professionals can help you study your medical history, find out facts about your family history and, if possible, calculate the risk for you and your baby. They may recommend certain laboratory tests to get more information.
Will my seizure pattern change after I have my baby?
That’s unpredictable. Some women with epilepsy have changes in their seizures while they are pregnant. During pregnancy, concentrations of your antiepileptic drug (AED) may change or decrease, putting you at greater risk for seizures. Your physician may increase your seizure medication for better seizure protection.
Stress and lack of sleep make my seizures worse. I'm worried about taking care of my baby.
Every parent has to think about this. Women who have just had a baby will have disturbed sleep, extra work and stress, and hormonal changes — and for a woman with epilepsy these factors can increase the risk of seizures. Include other family members and friends in the care of your baby, to give you a chance to rest. As a parent, during pregnancy and after delivery, the best thing you can do for your baby is to take good care of yourself. Get enough sleep, eat well, exercise regularly and take your prescribed seizure medication. Talk over any problems with your neurologist and your primary health care provider, and get their advice about any necessary adjustments in your lifestyle.
I want to breast-feed my baby. Will that be safe?
For most women with epilepsy, breast-feeding is a safe option. All seizure medications will be found in breast milk, but this usually does not affect the baby who has been exposed already to the mother’s medication during pregnancy.
What if I have a seizure while I'm holding the baby?
There is no way to ensure that you won’t have a seizure while you are caring for your new baby. But you can always have a plan to protect the baby if a seizure occurs. If you have a warning before you have a seizure, you can maintain a secure area in each room of your house where you can safely lay the baby down if you feel a seizure coming on.
What about night-time feeding and getting enough sleep?
I have heard a lot recently about postpartum depression. Is that something I need to think about?
Women with epilepsy experience the same emotional adjustments as other women after having a baby. Be sure to discuss any changes in mood with your doctor, particularly if they continue or recur over time and if they prevent you from carrying out your normal routine.
I'm concerned about getting prenant too soon after I have my baby. What can I do to prevent an unexpected pregnancy?
It’s a good idea to think about this. Breast-feeding and the expected hormonal changes in the months right after having a baby can make birth control complicated for any woman. Work with your neurologist and your gynecologist/obstetrician to choose the birth control method that is most appropriate for you.
What does the change of life have to do with my seizure disorder?
Menopause is the time in a woman’s life when her ovaries stop working, her menstrual periods stop and the level of sex hormones in her body decreases. We know that because hormones have an effect on brain function, seizure patterns may change in some women as they go through menopause, just as they may at other times of hormonal change. You may contact the Epilepsy Foundation for the information sheet like this one on Hormones and Epilepsy.
I'm 50 years old and my periods are less frequent. I'm having hot flashes too. Is this a different kind of seizure?
Probably not, although some women feel flushed as part of a seizure. It is common for a woman of your age to be going through menopause and having “hot flashes” as an uncomfortable side effect of menopause. Talk to your physician and your neurologist about this and let them help you sort it out.
I thought I had less estrogen after menopause and that estrogen sometimes caused seizures. Why wouldn't my seizures get better?
It’s complicated. Estrogen does excite certain brain cells that may be involved in seizures. The other female sex hormone, progesterone, seems to inhibit or prevent seizures in some women. But both hormones decrease in your body with menopause so it is not easy to predict what will happen with your seizure pattern. Some women have more seizures as they go through menopause, some have less and many see no change at all.
My mother has thin bones and I've been told I should take estrogen when I get to menopause. Can I do that if I have seizures?
The decision to take estrogen is an individual one, based on a lot of factors you should talk over with your physician. Taking supplemental hormones at the time of menopause is called hormone replacement therapy (HRT). Estrogen may reduce the risk of heart disease in some women, and offers protection against osteoporosis (thinning of the bones).
If I can't take estrogen, is there anything else I can do to keep from getting osteoporosis?
Yes. Eat a diet high in calcium and ask your doctor about calcium supplements with vitamin D. Get some regular physical exercise and limit alcohol intake. Don’t smoke. All of these things are a part of a healthy lifestyle in any woman and may reduce the risk of bone disorders after menopause.
Will my seizure medication change as I get older?
I'm middle-aged and my seizures got more frequent recently. Do I have to accept that as part of menopause?
It’s important to remember that menopause is usually a process, not a sudden event. A change in your seizure pattern deserves an evaluation by your physician. There can be many causes for increased seizures and not all are related to hormones.