Most people with epilepsy lead outwardly normal lives. Approximately 80 percent can be significantly helped by modern therapies, and some may go months or years between seizures. However, epilepsy can and does affect daily life for people with epilepsy, their families, and their friends. People with severe seizures that resist treatment have, on average, a shorter life expectancy and an increased risk of cognitive impairment, particularly if the seizures developed in early childhood. These impairments may be related to the underlying conditions that cause epilepsy or to epilepsy treatment rather than the epilepsy itself.
It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems. Sometimes these problems are caused by embarrassment or frustration associated with epilepsy. Other problems may result from bullying, teasing, or avoidance in school and other social settings. In children, these problems can be minimized if parents encourage a positive outlook and independence, do not reward negative behavior with unusual amounts of attention, and try to stay attuned to their child's needs and feelings. Families must learn to accept and live with the seizures without blaming or resenting the affected person. Counseling services can help families cope with epilepsy in a positive manner. Epilepsy support groups also can help by providing a way for people with epilepsy and their family members to share their experiences, frustrations, and tips for coping with the disorder.
People with epilepsy have an increased risk of poor self-esteem, depression, and suicide. These problems may be a reaction to a lack of understanding or discomfort about epilepsy that may result in cruelty or avoidance by other people. Many people with epilepsy also live with an ever-present fear that they will have another seizure.
For many people with epilepsy, the risk of seizures restricts their independence, in particular the ability to drive. Most states and the District of Columbia will not issue a driver's license to someone with epilepsy unless the person can document that they have gone a specific amount of time without a seizure (the waiting period varies from a few months to several years). Some states make exceptions for this policy when seizures don't impair consciousness, occur only during sleep, or have long auras or other warning signs that allow the person to avoid driving when a seizure is likely to occur. Studies show that the risk of having a seizure-related accident decreases as the length of time since the last seizure increases. One study found that the risk of having a seizure-related motor vehicle accident is 93 percent less in people who wait at least 1 year after their last seizure before driving, compared to people who wait for shorter intervals.
The risk of seizures also restricts people's recreational choices. For instance, people with epilepsy should not participate in sports such as skydiving or motor racing where a moment's inattention could lead to injury. Other activities, such as swimming and sailing, should be done only with precautions and/ or supervision. However, jogging, football, and many other sports are reasonably safe for a person with epilepsy. Studies to date have not shown any increase in seizures due to sports, although these studies have not focused on any activity in particular. There is some evidence that regular exercise may even improve seizure control in some people. Sports are often such a positive factor in life that it is best for the person to participate, although the person with epilepsy and the coach or other leader should take appropriate safety precautions. It is important to take steps to avoid potential sports-related problems such as dehydration, overexertion, and hypoglycemia, as these problems can increase the risk of seizures.
By law, people with epilepsy or other handicaps in the United States cannot be denied employment or access to any educational, recreational, or other activity because of their seizures. However, one survey showed that only about 56 percent of people with epilepsy finish high school and about 15 percent finish college — rates much lower than those for the general population. The same survey found that about 25 percent of working-age people with epilepsy are unemployed. These numbers indicate that significant barriers still exist for people with epilepsy in school and work. Restrictions on driving limit the employment opportunities for many people with epilepsy, and many find it difficult to face the misunderstandings and social pressures they encounter in public situations. Antiepileptic drugs also may cause side effects that interfere with concentration and memory. Children with epilepsy may need extra time to complete schoolwork, and they sometimes may need to have instructions or other information repeated for them. Teachers should be told what to do if a child in their classroom has a seizure, and parents should work with the school system to find reasonable ways to accommodate any special needs their child may have.
Women with epilepsy are often concerned about whether they can become pregnant and have a healthy child. This is usually possible. While some seizure medications and some types of epilepsy may reduce a person's interest in sexual activity, most people with epilepsy can become pregnant. Moreover, women with epilepsy have a 90 percent or better chance of having a normal, healthy baby, and the risk of birth defects is only about 4-6 percent. The risk that children of parents with epilepsy will develop epilepsy themselves is only about 5 percent unless the parent has a clearly hereditary form of the disorder. Parents who are worried that their epilepsy may be hereditary may wish to consult a genetic counselor to determine what the risk might be. Amniocentesis and high-level ultrasound can be performed during pregnancy to ensure that the baby is developing normally, and a procedure called a maternal serum alpha-fetoprotein test can be used for prenatal diagnosis of many conditions if a problem is suspected.
There are several precautions women can take before and during pregnancy to reduce the risks associated with pregnancy and delivery. Women who are thinking about becoming pregnant should talk with their doctors to learn any special risks associated with their epilepsy and the medications they may be taking. Some seizure medications, particularly valproate, trimethadione, and phenytoin, are known to increase the risk of having a child with birth defects such as cleft palate, heart problems, or finger and toe defects. For this reason, a woman's doctor may advise switching to other medications during pregnancy. Whenever possible, a woman should allow her doctor enough time to properly change medications, including phasing in the new medications and checking to determine when blood levels are stabilized, before she tries to become pregnant. Women should also begin prenatal vitamin supplements — especially with folic acid, which may reduce the risk of some birth defects — well before pregnancy. Women who discover that they are pregnant but have not already spoken with their doctor about ways to reduce the risks should do so as soon as possible. However, they should continue taking seizure medication as prescribed until that time to avoid preventable seizures. Seizures during pregnancy can harm the developing baby or lead to miscarriage, particularly if the seizures are severe. Nevertheless, many women who have seizures during pregnancy have normal, healthy babies.
Women with epilepsy sometimes experience a change in their seizure frequency during pregnancy, even if they do not change medications. About 25 to 40 percent of women have an increase in their seizure frequency while they are pregnant, while other women may have fewer seizures during pregnancy. The frequency of seizures during pregnancy may be influenced by a variety of factors, including the woman's increased blood volume during pregnancy, which can dilute the effect of medication. Women should have their blood levels of seizure medications monitored closely during and after pregnancy, and the medication dosage should be adjusted accordingly.
Pregnant women with epilepsy should take prenatal vitamins and get plenty of sleep to avoid seizures caused by sleep deprivation. They also should take vitamin K supplements after 34 weeks of pregnancy to reduce the risk of a blood-clotting disorder in infants called neonatal coagulopathy that can result from fetal exposure to epilepsy medications. Finally, they should get good prenatal care, avoid tobacco, caffeine, alcohol, and illegal drugs, and try to avoid stress.
Labor and delivery usually proceed normally for women with epilepsy, although there is a slightly increased risk of hemorrhage, eclampsia, premature labor, and cesarean section. Doctors can administer antiepileptic drugs intravenously and monitor blood levels of anticonvulsant medication during labor to reduce the risk that the labor will trigger a seizure. Babies sometimes have symptoms of withdrawal from the mother's seizure medication after they are born, but these problems wear off in a few weeks or months and usually do not cause serious or long-term effects. A mother's blood levels of anticonvulsant medication should be checked frequently after delivery as medication often needs to be decreased.
Epilepsy medications need not influence a woman's decision about breastfeeding her baby. Only minor amounts of epilepsy medications are secreted in breast milk; usually not enough to harm the baby and much less than the baby was exposed to in the womb. On rare occasions, the baby may become excessively drowsy or feed poorly, and these problems should be closely monitored. However, experts believe the benefits of breast-feeding outweigh the risks except in rare circumstances.
To increase doctors' understanding of how different epilepsy medications affect pregnancy and the chances of having a healthy baby, Massachusetts General Hospital has begun a nationwide registry for women who take antiepileptic drugs while pregnant. Women who enroll in this program are given educational materials on pre-conception planning and perinatal care and are asked to provide information about the health of their children (this information is kept confidential). Women and physicians can contact this registry by calling 1-888-233-2334 or 617-726-7739 (fax: 617-724-8307).
Women with epilepsy should be aware that some epilepsy medications can interfere with the effectiveness of oral contraceptives. Women who wish to use oral contraceptives to prevent pregnancy should discuss this with their doctors, who may be able to prescribe a different kind of antiepileptic medication or suggest other ways of avoiding an unplanned pregnancy.
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