Epilepsy Program

Social Issues in Epilepsy

The most important issues for patients with epilepsy are social. Although physicians, in their clinic encounters with patients, talk most about seizure frequency, medication side effects, and results of testing, patients may have a different set of concerns. 

They want to know how to deal with the embarrassment of a seizure. They want to know how seizures are going to affect their ability to get or keep a good job, or succeed in school. They want to know what seizures will mean for their social life, marriage, a family, childbearing and raising. They want to know what seizures will do to their driver's license and independence. 

Epilepsy is associated with considerable fear, misinformation and stigma. For obscure historical reasons, epilepsy is viewed by the public as a disorder linked to insanity, or in some cases even evil. Successful treatment of people with epilepsy requires an approach to these social issues. 

Driving

Much discussion occurs about driving. People with frequent seizures should not drive, but people with infrequent seizures may be allowed to drive as a risk that is comparable to those taken with other medical conditions. Different states have different seizure-free intervals, varying from three months to two years. The shorter time intervals allow people with epilepsy to make other arrangements for work or driving, and theoretically encourage honesty in their reporting of seizures. People with seizures can obtain exemptions allowing driving if the seizures are restricted to times of sleep, or if the seizures have a prolonged and consistent warning that would allow someone to pull safely over, or if seizures are of a type that does not affect driving. 

Most states make it the responsibility of the person with epilepsy to notify the motor vehicle division. California is one of the six states that require seizure reporting by patients and doctors as a matter of law. Failure to report can result in criminal prosecution. Most physicians disagree with the required reporting, because it encourages dishonesty with the physician about the occurrence of seizures, which may prevent adequate treatment. 

Employment 

Most people with epilepsy work full and productive jobs. Certain jobs that involve driving, operation of life- or limb-threatening machinery, caustic chemicals, prolonged periods of working on heights or working underwater, should not be done by people with uncontrolled seizures. Any job restrictions should be individualized.

The 1990 Americans for Disabilities Act prohibits discrimination in the marketplace against people with disabilities. This includes epilepsy. If people with epilepsy cannot do their job because of seizures, an attempt must be made to make a reasonable accommodation for them within the framework of their employment. 

School

Children with epilepsy can do well in school, but some do not. This may be because of social and peer pressure factors and factors of self-image and expectations. Other children have epilepsy because of an underlying injury to brain, and that brain injury may impair their ability to learn. Another major factor is anti-epileptic medications, which can impact negatively on learning and behavior. This is particularly true for barbiturate medications. A balance must be struck between the need for seizure control and the side effects of medications on schooling.

Pregnancy

Women with epilepsy can become pregnant, have normal children, and participate fully in parenthood. Pregnancies are higher risk for women with epilepsy, because of the seizures and the antiepileptic medications. Occasionally, seizures may increase during pregnancy, but they are just as likely to improve or remain stable.

Birth defect risks are a few percent higher in women with epilepsy. The baseline rate of birth defects, large or small, is about two percent for American women. This birth defect risk increases to 5-10 percent among women with epilepsy. Looked at positively, more than 90 percent of women will have healthy babies. Some contribution to the birth defect risk is made by seizures, and by underlying general risk factors, but the main birth defect risk is from antiepileptic medications. Monotherapy (one anti-seizure drug, rather than many) is preferred during pregnancy, provided it controls the seizures. Although there is much debate about medications that are best during pregnancy, no scientific study gives us guidance as to one medication truly being safer than another medication.

Phenytoin (Dilantin), and barbiturates can cause cleft lip/palate, or other skull, face, or heart malformations. Valproic acid (Depakote) and carbamazepine (Tegretol, Carbatrol) are linked to open spine problems. Carbamazepine can cause "minor defects", such as fingernail malformations, or mild facial feature distortions, that resolve by age five. Many other birth defects are possible, and any seizure medicine has the capacity to induce any of the defects. The best rule is to use the single medicine that is most effective in treating the woman's seizures. 

Supplementation with folic acid (folate) 0.4 - 1.0 mg per day reduces risk for open-spine birth defects among populations of women without neurological disease. By analogy, most epilepsy doctors prescribe folic acid for women who might become pregnant while on antiepileptic medications. The best dose is not known, but quantities range from 1 - 5 mg per day. Most over-the-counter daily vitamins contain 0.4 mg (400 micrograms) of folic acid, and most prenatal vitamins, 1 mg. Doses of folic acid of 1 mg or less seem to have no side effects, although high doses can sometimes suppress signs of blood disorders. The folic acid should be taken every day, since most women are not even aware that they are pregnant as the spine is being formed in the first 6 weeks of pregnancy.

Breastfeeding is beneficial, and the benefits usually outweigh the risks from trace amounts of seizure medicine present in the breast milk. The mother should recognize that the child already has been exposed for 9 months to the medicine in the placental bloodstream.

A pregnancy registry for women with epilepsy is being maintained in Boston, at (888) 233-2334, and internationally at several other sites. We recommend that pregnant women with epilepsy call this number, obtain information and provide some information to the registry. By such tracking of pregnancies, we will obtain accurate information on which to base future advice.

Injuries from seizures

Occasionally seizures can provoke injuries. The goal is to live your life as fully as you can, but with common sense about potential injuries. People with infrequent seizures (for example, small seizures less than every three months) may have no need for restrictions. People with frequent seizures should exhibit special care in water, including bathtubs (it may be safer to shower sitting), around hot water or flames, on prolonged heights (brief climbs up ladders or stairs are usually safe for most people), around dangerous cutting and chopping machinery without safety guards, or in other obvious potentially dangerous situations. These potential risks apply both to the home environment and to the workplace.

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