|Volume 6 Issue 118 Published - 14:00 UTC 08:00 EST 27-Apr-2004 Next Update - 14:00 UTC 08:00 EST 28-Apr-2004||Editor: Susan K. Boyer, RN
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Epilepsy presents unique problems for women
Anti-epileptic drugs (AEDs) are powerful medications that help women with epilepsy control their seizures; however, when these same women have to deal with reproductive issues and their epilepsy drugs, a myriad of problems can crop up, according to Mark Yerby, M.D., MPH, a leading expert in women's issues and epilepsy. About 1 million of the estimated 2.5 million Americans with epilepsy are women.
Dr. Yerby is associate clinical professor of neurology, public health and preventive medicine, and obstetrics and gynecology at the Oregon Health Science University and director of the Epilepsy Program at Providence St. Vincent's Medical Center, both in Portland, Ore. He spoke today at an American Medical Association media briefing in partnership with the American Academy of Neurology (AAN) and the American Epilepsy Society at the AAN's annual meeting in San Francisco.
Hormonal changes may be responsible for some of the specific difficulties encountered by women with epilepsy. Many women find that their seizures change in severity or occur more frequently during puberty, pregnancy, when they are menstruating or during menopause.
"Pregnancy presents particular difficulties for women with epilepsy," Dr. Yerby said. "In pregnancy, drugs are generally contraindicated, but women with epilepsy cannot just simply stop taking their medications. If they do, they may have more seizures and risk injury to themselves and the fetus. They may be subject to other risks, such as losing their jobs or driver's license."
Other adverse outcomes of uncontrolled seizures, Dr. Yerby noted, are fetal loss, infant mortality, decreased growth of the fetus and abnormal cognitive development (increased 2-fold in the children of women with epilepsy).
On the other hand, some AEDs are associated with a higher risk for birth defects. The fear of birth defects can cause women to stop taking their epilepsy medication. "People think drugs are bad--they forget about why we treat people with drugs in the first place," Dr. Yerby said. "There is great emphasis today on the hazards of medication--that's okay, but people lose sight of the fact that having a seizure is a hazard."
Dr. Yerby suggests that women with epilepsy consult with their doctors to determine how they can remain on their medication while minimizing risk. "There are a number of options," Dr. Yerby stated. "We can adjust the dose of medication, change the medication and monitor its effectiveness, or withdraw medication altogether. It is best if we can get expectant mothers on a single medication that works to minimize side effects and risk." Women planning to conceive should consult closely with their physicians so their treatment plan can be determined in advance when possible.
Dr. Yerby added that breast-feeding is generally not problematic for the babies of women with epilepsy. "Usually the child has been exposed to the drugs for nine month in utero and by the time they are born they can metabolize their mother's medication present in the breast milk," he explained. "The safety of newer drugs in both pregnancy and breastfeeding, however, is still being determined."
Other problems specific to women with epilepsy are that AEDs can decrease the efficacy of hormonal contraceptives (whether given by mouth, subcutaneously or by injection). "There are five AEDs that interfere with the efficacy of the pill and at least one AED that is affected by oral contraception," Dr. Yerby stated. "Sometimes we can overcome these problems by prescribing a higher-dose contraceptive. Women who have unplanned pregnancies should stay on their AEDs and notify their physician immediately."
"Women with epilepsy need special care in managing their disorder," Dr. Yerby stated. "They cannot safely stop taking their medication without risking seizures and injury to themselves and their unborn."
For nearly three thousand years, people believed that epilepsy had a supernatural cause. But the most dangerous misconception about epilepsy is a modern one, according to epilepsy expert Jerome Engel, Jr., M.D., Ph.D.--many people, including physicians, still believe that epilepsy can't be treated.
"Epilepsy and epileptic seizures are far more common than people realize," said Dr. Engel, Jonathan Sinay Professor of Neurology and Neurobiology at the David Geffen School of Medicine at UCLA, chief of epilepsy and clinical neurophysiology at the UCLA Center for the Health Sciences and director of the UCLA Seizure Disorder Center, Reed Neurological Research Center, Los Angeles.
Dr. Engel spoke today at an American Medical Association media briefing in partnership with the American Academy of Neurology (AAN) and the American Epilepsy Society at the AAN's annual meeting in San Francisco.
Epileptic seizures are a sign of brain dysfunction. "A very simple way to explain a seizure might be as overactivity in the brain, often, though not always, the result of an injury," he said. "Epilepsy is the chronic condition that results when these brain disturbances persist. Early diagnosis and treatment are vital, because seizures should be stopped before the patient suffers irreversible damage."
Forty million people worldwide have epilepsy. Five to 10 percent of the U.S. population will have a seizure during their lifetime and of those, 30 percent will develop epilepsy. The burden of this disease, however, can't be understood simply through the numbers, according to Dr. Engel.
"Uncontrolled epilepsy presents an enormous personal burden," said Dr. Engel. "Seizures happen without warning and are frightening and embarrassing; they can result in accidental injury or even death. Imagine the restrictions this places on an active life. A person with epilepsy can't drive a car, hold certain jobs, or participate fully in recreational activities."
"This is a disease that strikes the young, often children," Dr. Engel said. "This means years and years of disability, lost years of good quality of life and lost earnings. When these elements are factored in, the impact of epilepsy worldwide is equal to the impact of breast cancer in women and lung cancer in men."
The restrictions on daily activity and years of disability would be bad enough, but they are made worse by the stigma that is still attached to epilepsy. "Even today a surprising number of people believe epilepsy is supernatural, caused by possession," said Dr. Engel. "Many people still believe that epilepsy is a psychiatric disorder or mental retardation. An editorial in the British Medical Journal recently put it well: "The history of epilepsy is 3000 years of ignorance, stigma, and discrimination and 100 years of knowledge, stigma, and discrimination."
The most destructive misperception about epilepsy is that it can't be effectively treated. "Even physicians often believe that seizures can't be stopped, leading to treatment delays that can result in preventable, irreversible disability," said Dr. Engel. "Our treatment objectives should be no seizures, no side effects and the earliest possible intervention."
Guidelines can have an enormous impact on treatment by educating physicians and directing research goals. "Last year, the American Academy of Neurology introduced guidelines stating that surgical treatment for temporal lobe epilepsy is effective, but did not answer the question of how quickly it should be considered'," said Dr. Engel. "Their recommendation has resulted in the National Institute of Neurological Disorders and Stroke (NINDS) committing $30 million dollars for the Early Randomized Surgical Epilepsy Trial (ERSET) to address this issue."