The majority of people with epilepsy can do the same things as people without the disorder and have successful and productive lives. In most cases it does not affect job choice or performance. One-third or more of people with epilepsy, however, may have cognitive or neuropsychiatric co-concurring symptoms that can negatively impact their quality of life. Many people with epilepsy are significantly helped by available therapies, and some may go months or years without having a seizure. However, people with treatment-resistant epilepsy can have as many as hundreds of seizures a day or they can have one seizure a year with sometimes disabling consequences. On average, having treatment-resistant epilepsy is associated with an increased risk of cognitive impairment, particularly if the seizures developed in early childhood. These impairments may be related to the underlying conditions associated with the epilepsy rather than to the epilepsy itself.
Mental Health and Stigmatization
Depression is common among people with epilepsy. It is estimated that one of every three persons with epilepsy will have depression in the course of his or her lifetime, often with accompanying symptoms of anxiety disorder. In adults, depression and anxiety are the two most frequent mental health-related diagnoses. In adults, a depression screening questionnaire specifically designed for epilepsy helps health care professions identify people who need treatment. Depression or anxiety in people with epilepsy can be treated with counseling or most of the same medications used in people who don’t have epilepsy. People with epilepsy should not simply accept that depression is part of having epilepsy and should discuss symptoms and feelings with health care professionals.
Children with epilepsy also have a higher risk of developing depression and/or attention deficit hyperactivity disorder compared with their peers. Behavioral problems may precede the onset of seizures in some children.
Children are especially vulnerable to the emotional problems caused by ignorance or the lack of knowledge among others about epilepsy. This often results in stigmatization, bullying, or teasing of a child who has epilepsy. Such experiences can lead to behaviors of avoidance in school and other social settings. Counseling services and support groups can help families cope with epilepsy in a positive manner.
Driving and Recreation
Most states and the District of Columbia will not issue a driver's license to someone with epilepsy unless the person can document that she/he has been seizure-free for a specific amount of time (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. Commercial drivers’ licenses have additional restrictions. In addition, people with epilepsy should take extra care if a job involves operation of machinery or vehicles.
The risk of seizures also limits people's recreational choices. Individuals may need to take precautions with activities such as climbing, sailing, swimming, or working on ladders. Studies 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 improve seizure control in some people, but this should be done under a doctor’s supervision. The benefits of sports participation may outweigh the risks and coaches or other leaders can take appropriate safety precautions. Steps should be taken to avoid dehydration, overexertion, and hypoglycemia, as these problems can increase the risk of seizures.
Education and Employment
By law, people with epilepsy (or disabilities) in the United States cannot be denied employment or access to any educational, recreational, or other activity because of their epilepsy. However, significant barriers still exist for people with epilepsy in school and work. Antiseizure drugs 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.
Pregnancy and Motherhood
Women with epilepsy are often concerned about whether they can become pregnant and have a healthy child. Epilepsy itself does not interfere with the ability to become pregnant. With the right planning, supplemental vitamin use, and medication adjustments prior to pregnancy, the odds of a woman with epilepsy having a healthy pregnancy and a healthy child are similar to a woman without a chronic medical condition.
Children of parents with epilepsy have about 5 percent risk of developing the condition at some point during life, in comparison to about a 1 percent risk in a child in the general population. However, the risk of developing epilepsy increases if a 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 their risk of passing on the disorder.
Other potential risks to the developing child of a woman with epilepsy or on antiseizure medication include increased risk for major congenital malformations (also known as birth defects) and adverse effects on the developing brain. The types of birth defects that have been most commonly reported with antiseizure medications include cleft lip or cleft palate, heart problems, abnormal spinal cord development (spina bifida), urogenital defects, and limb-skeletal defects. Some antiseizure medications, particularly valproate, are known to increase the risk of having a child with birth defects and/or neurodevelopmental problems, including learning disabilities, general intellectual disabilities, and autism spectrum disorder. It is important that a woman work with a team of providers that includes her neurologist and her obstetrician to learn about any special risks associated with her epilepsy and the medications she may be taking.
Although planned pregnancies are essential to ensuring a healthy pregnancy, effective birth control is also essential. Some antiseizure medications that induce the liver’s metabolic capacity can interfere with the effectiveness of hormonal contraceptives (e.g., birth control pills, vaginal ring). Women who are on these enzyme-inducing antiseizure medications and using hormonal contraceptives may need to switch to a different kind of birth control that is more effective (such as different intrauterine devices, progestin implants, or long-lasting injections).
Prior to a planned pregnancy, a woman with epilepsy should meet with her health care team to reassess the current need for antiseizure medications and to determine a) the optimal medication to balance seizure control and avoid birth defects and b) the lowest dose for going into a planned pregnancy. Any transitions to either a new medication or dosage should be phased in prior to the pregnancy, if possible. If a woman’s seizures are controlled for the 9 months prior to pregnancy, she is more likely to continue to have seizure control during pregnancy. For all women with epilepsy during pregnancy, approximately 15-25 percent will have seizure worsening, but another 15-25 percent will have seizure improvement. As a woman’s body changes during pregnancy, the dose of seizure medication may heed to be increased. For most medicines, monthly monitoring of blood levels of the antiseizure medicines can help to assure continued seizure control. Many of the birth defects seen with antiseizure medications occur in the first six weeks of pregnancy, often before a woman is aware she is pregnant. In addition, up to 50 percent of pregnancies in the U.S. are unplanned. For these reasons, the discussion about the medications should occur early between the health care professional and any woman with epilepsy who is in her childbearing years.
For all women thinking of becoming pregnant, using supplemental folic acid beginning prior to conception and continuing the supplement during pregnancy is an important way to lower the risk for birth defects and developmental delays. Prenatal multivitamins should also be used prior to the beginning of pregnancy. Pregnant women with epilepsy should get plenty of sleep and avoid other triggers or missed medications to avoid worsening of seizures.
Most pregnant women with epilepsy can deliver with the same choices as women without any medical complications. During the labor and delivery, it is important that the woman be allowed to take her same formulations and doses of antiseizure drugs at her usual times; it is often helpful for her to bring her medications from home. If a seizure does occur during labor and delivery, intravenous short-acting medications can be given if necessary. It is unusual for the newborns of women with epilepsy to experience symptoms of withdrawal from the mother's antiseizure medication (unless she is on phenobarbital or a standing dose of benzodiazepines), but the symptoms resolve quickly and there are usually no serious or long-term effects.
The use of antiseizure medications is considered safe for women who choose to breastfeed their child. On very rare occasions, the baby may become excessively drowsy or feed poorly, and these problems should be closely monitored. However, experts believe the benefits of breastfeeding outweigh the risks except in rare circumstances. One large study showed that the children who were breastfed by mothers with epilepsy on antiseizure medications performed better on learning and developmental scales than the babies who were not breastfed. It is common for the antiseizure medication dosing to be adjusted again in the postpartum setting, especially if the dose was altered during pregnancy.
With the appropriate selection of safe antiseizure medicines during pregnancy, use of supplemental folic acid, and ideally, with pre-pregnancy planning, most women with epilepsy can have a healthy pregnancy with good outcomes for themselves and their developing child.