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Women with Epilepsy
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Book description

In this handbook for sufferers, their clinicians, families and friends, Martha Morrell assembles a team of experts to review the special problems faced by women with epilepsy. In many ways epilepsy is a different disease in women than in men, given the biological and gender differences between the two. Epilepsy treatments affect fertility, and can cause pregnancy complications and birth defects, but most of the available drugs have been tested on men. Moreover, hormone effects on seizures are of particular concern to women at puberty, at menopause, and over the menstrual cycle. Many health-care providers are not informed about the unique issues facing women with epilepsy. This book, published in association with the Epilepsy Foundation of America, fills that gap and provides women with epilepsy with the information they need to be effective self-advocates.

Reviews

‘The book is beautifully designed, printed, and produced … Women with Epilepsy deserves the attention of the wide audience for whom it is written. Men with epilepsy need not feel neglected because there is much content that is applicable to their seizure-related problems.’

Source: The Lancet

'The fantasy of conjuring up experts to answer vexing conundrums in medicine is made real in this tidy little paperback. This could well have been titled Everything You Ever Wanted to Know About Epilepsy … But Were Afraid to Ask.'

Source: Psychiatry

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Contents


Page 1 of 2


  • 1 - Introduction: why we wrote this book
    pp 3-6
    • By Martha J. Morrell, Professor of Clinical Neurology, Columbia University; Director of the Columbia Comprehensive Epilepsy Center, New York Presbyterian Hospital
  • View abstract

    Summary

    In many ways, epilepsy is a different disease in a woman than in a man. It is recognized that epilepsy is one of the chronic medical conditions that raise special issues for women. This has increased the educational materials available to health-care providers. However, there is still very little literature available for the nonmedical public that comprehensively addresses the biological, psychosocial, and treatment issues faced by women with epilepsy. The Epilepsy Foundation has recognized the importance of encouraging educational outreach as part of the broader based "Women with Epilepsy Initiative" launched in 1997. This book is a part of that larger effort. It provides information that will permit a woman with epilepsy to educate herself about optimal medical care, not only for epilepsy, but also to maintain the best general and reproductive health.
  • 2 - On being a woman with epilepsy
    pp 7-16
  • View abstract

    Summary

    In this chapter, the author shares her personal experience and perspective on what it has been like to live with epilepsy. The author explains how she navigated the medical system, the questions she asked and how she become an effective self-advocate. Women who are coping with seizure disorders are making decisions and living their lives without adequate information, sometimes with false information and, all too often, with fear. Everyone who takes medication for epilepsy has concerns about possible side effects. Besides the visible side effects of various antiepileptic drugs (AEDs), there are two areas in which women may have epilepsy-related fears. The first is child-bearing and raising. The second area of concern is that of physical safety, especially the risk of sexual assault during, or just after, a seizure. In the author's view, taking responsibility for one's own well-being is essential to living well as a woman with epilepsy.
  • 3 - The woman with epilepsy: a historical perspective
    pp 17-34
    • By Orrin Devinsky, Department of Neurology, NYU Comprehensive Epilepsy Center, 560 First Avenue, Rivergate, New York, NY 10016, USA
  • View abstract

    Summary

    This chapter reviews the medical history of epilepsy as it relates to women. It presents an extensive knowledge about epilepsy, its treatment, and a collection of related historical texts. The medical and social histories of epilepsy are filled with stories of wrong information and wrong action. Two surveys of the history of epilepsy show a strong male bias in the medical writings on the diagnosis, causation, and treatment of people with epilepsy from ancient to more recent times. Menarche, menstruation, and menopause have been associated with changes in epileptic seizure activity for centuries. During the twentieth century, women with epilepsy have benefited from greater understanding of epilepsy, major advances in diagnostic tools, awareness, and attempts to formulate individualized, safe approaches to special issues such as birth control, pregnancy, sexual function, and menopause.
  • 4 - Quality of life issues for women with epilepsy
    pp 35-44
    • By Joyce A. Cramer, Yale University School of Medicine, VA Connecticut Health Care System, 950 Campbell Avenue, West Haven, CT 06516, USA
  • View abstract

    Summary

    This chapter discusses how quality of life (QOL) may be disrupted by epilepsy. It provides suggestions about how to communicate the QOL concerns to the health-care team. The medical profession has only recently moved toward appreciating that health-related QOL (HRQOL) is an important component in assessing the effectiveness of health care. Five general domains can be used to describe HRQOL: physical condition; psychological condition; vocational (work) capacity; social function; and disease-specific conditions. Several questionnaires have been developed that allow people with epilepsy to express their concerns about the variety of issues that affect their lives. The use of HRQOL assessment as part of routine assessment for people with epilepsy gives them the opportunity to respond to direct questions about all major aspects of living with epilepsy. HRQOL scores can be considered a new measure of overall patient function, like blood levels for antiepileptic drugs (AED).
  • 5 - The genetics of epilepsy
    pp 47-56
    • By Melodie R. Winawer, Columbia University, Sergievsky Center, 630 W. 168th Street, New York, NY 10032, USA, Ruth Ottman, Columbia University, GH Sergievsky Center, 630 W. 168th Street, New York, NY 10032, USA
  • View abstract

    Summary

    This chapter provides a thorough and comprehensible overview of epilepsy and genetics. The identification of epilepsy genes can contribute in many more important ways to public and individual health. In order to understand the genetic causes of epilepsy, it is important to review a few basic concepts and definitions. The chapter explains the basic genetic terms and concepts such as genes, chromosomes, autosomal dominant disease, autosomal recessive genes, sex chromosomes, X-linked dominant disease, and X-linked recessive disease. It explores how epilepsy is inherited. The risk of developing epilepsy in the relatives of affected people is increased compared with the general population, but the size of this risk depends on many factors, one of which is closeness of the relationship to the affected person. Studying the families of people affected with epilepsy is an important way of investigating the genetic contributions to the development of epilepsy.
  • 6 - Epilepsy: epidemiology, definitions, and diagnostic procedures
    pp 57-67
    • By Simon Shorvon, The National Hospital for Neurology and Neurosurgery, National Society for Epilepsy, Gerrards Cross Chalfont Centre for Epilepsy, Chalfont St Peter, Buckinghamshire SL9 ORJ, England, Dominic Heaney, The National Hospital for Neurology and Neurosurgery, National Society for Epilepsy, Gerrards Cross Chalfont Centre for Epilepsy, Chalfont St Peter, Buckinghamshire SL9 ORJ, England
  • View abstract

    Summary

    This chapter outlines and defines the epidemiology and etiology of epilepsy, and explains how these issues are closely related to the present systems of defining and classifying epilepsy. It highlights the issues particularly relevant to women. Epileptic seizures are produced by an abnormal rhythmic and repetitive discharge of neurons, either localized to a particular part of the brain (the 'focal' area) or 'generalized' throughout the whole cerebral cortex. Adults may also develop idiopathic epilepsy or epilepsy that is caused by pathologies developed in childhood. Many people suspect a genetic cause for their epilepsy and are afraid that they might pass it on to their children. The chapter describes the major techniques used to investigate epilepsy. New techniques such as single-photon emission computed tomography (SPECT), positron emission tomography (PET), and functional magnetic resonance imaging (MRI) can examine the functioning of patients' brains without the need to perform invasive surgical techniques.
  • 7 - Antiepileptic drugs and other treatments for epilepsy
    pp 68-76
    • By Jacqueline A. French, Department of Neurology, Hospital of University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA 19104, USA
  • View abstract

    Summary

    This chapter provides a comprehensive and comprehensible review of the major antiepileptic drugs (AEDs). Patients often hear their physician talk about 'drug levels'. A drug's effectiveness is determined by its ability to control seizures. Unfortunately, the drug, by its actions on the body or brain, may cause unwanted side effects as well. There are several types of side effects, but the most common are dose-related side effects. Dose-related side effects may include fatigue, dizziness, lack of coordination, or double vision. Diet and exercise can help, and the weight usually returns to baseline if the drug is discontinued. Phenytoin, in particular, can cause some cosmetic side effects that are troublesome to women. Several new AEDs have recently been approved by the Food and Drug Administration. These include gabapentin, lamotrigine, topiramate, tiagabine, levetiracetam, and oxcarbazepine. A newer technique recently approved for epilepsy treatment is the vagal nerve stimulator.
  • 8 - Epilepsy in children and adolescents
    pp 77-88
    • By Patricia Crumrine, Department of Neurology, Children's Hospital of Pittsburgh, 3705 5th Avenue at DeSoto Street, Pittsburgh, PA 15213, USA
  • View abstract

    Summary

    This chapter deals with epilepsy in girls and young women, and reviews the common epilepsy syndromes, treatment challenges, and educational and social concerns. Some seizure disorders can be grouped together as an epilepsy syndrome. The epileptic syndromes that present in adolescence are juvenile absence epilepsy, juvenile myoclonic epilepsy (JME), and generalized tonic-clonic seizures on awakening. Decisions about treating seizures in children and adolescents involve considerations of when to treat, how long to treat, selection of the best medications to use, supplementation with vitamins, and compliance with the treatment plan. Knowledge of possible drug interactions is important, for the physician, the caretakers, and the girl with epilepsy. Some antiepileptic drugs (AEDs), for example phenytoin, alter the concentration of vitamin D in the body. Children and adolescents who have normal cognitive development include those with febrile seizures, childhood absence epilepsy, benign focal epilepsy (rolandic epilepsy) and JME.
  • 9 - Nonepileptic seizures
    pp 89-98
    • By Steven C. Schachter, Beth Israel Deaconess Medical Center, Comprehensive Epilepsy Center, 300 Brookline Avenue, Boston, MA 02215, USA
  • View abstract

    Summary

    Nonepileptic seizures are behavioral events that look to other people like epileptic seizures or are events that create internal sensations that may also occur in people who have epileptic seizures. This chapter focuses on psychogenic nonepileptic seizures, which are referred to simply as nonepileptic seizures. The patient with nonepileptic seizures may have a history of having experienced one or more significant traumatic events, such as sexual or physical abuse. Electroencephalogram (EEG) monitoring is the best way to make an accurate diagnosis of nonepileptic seizures. This test involves recording the brain rhythms of the patient for a prolonged period, typically for one or more days, usually in the hospital and while video images of the patient are also being recorded. Treatment begins when the results of EEG monitoring (including the findings of the provocative tests, if done) are discussed with the patient.
  • 10 - Brain differences
    pp 101-111
    • By Paula Shear, Department of Psychiatry, University of Cincinnati, Cincinnati, OH 45221, USA, Rosemary Fama, SRI International, 333 Ravenswood Avenue, Menlo Park, CA 94025, USA
  • View abstract

    Summary

    This chapter provides an overview of the differences between men and women in terms of brain development, normal cognitive (thinking) skills, and the cognitive difficulties that may result from epilepsy. This chapter emphasizes on the biology of sex differences in brain functioning, but there are many 'nonbiological' factors that also explain differences in behavior between men and women. There are several human disorders that act as 'experiments of nature because they provide information about the cognitive effect of early hormone exposure. Many studies have examined the differences between males and females in the nature and severity of cognitive deficits that develop after brain injury or neurologic disorders. These studies explore whether damage to a specific brain region causes different types of cognitive problems in men and women. Several studies have examined whether men and women differ in their cognitive abilities after epilepsy surgery in the anterior temporal lobe.
  • 11 - Sex hormones and how they act in the brain: a primer on the molecular mechanisms of action of sex steroid hormones
    pp 112-118
    • By Philip A. Schwartzkroin, Department of Neurological Surgery, University of California at Davis, One Shields Avenue, Davis, CA 95616, USA
  • View abstract

    Summary

    Women with epilepsy have known for some time that female hormones affect seizures. Female sex hormones change the excitability of brain neurons by increasing excitation or inhibition. These hormones act on the cell membrane, changing the threshold for firing, change the rate at which neurons manufacture excitatory and inhibitory brain chemicals, and even change the shape of neurons, altering the way brain cells connect to one another. Steroid molecules: estrogen and progesterone easily pass through the cell membrane and are able to find receptor molecules within the cell. Progesterone can depress brain excitability, and therefore may reduce seizure activity. The other major female sex steroid hormone, estrogen, has an almost opposite effect from progesterone. The most direct, fastest, and obvious effect of estrogen is to increase the excitatory neurotransmitters in brain regions such as the hippocampus which are thought to be responsible for the generation of temporal lobe seizures.
  • 12 - Epilepsy and the menstrual cycle
    pp 119-130
    • By Patrica O. Shafer, Beth Israel Deaconess Medical Center, Comprehensive Epilepsy, Center, 300 Brookline Avenue, Boston, MA 02215, USA, Andrew G. Herzog, Beth Israel Deaconess Medical Center, Harvard Neuroendocrine Unit, 330 Brookline Avenue, Boston, MA 02215, USA
  • View abstract

    Summary

    This chapter provides an overview of the normal menstrual cycle and what changes may be seen in women with epilepsy. Catamenial epilepsy, as well as the effects of seizures and medications on menstruation and of hormonal changes on seizures, are explained. Typically, catamenial seizures were thought to occur only immediately before or during menstruation. Both estrogen and progesterone affect the excitability of brain cells, especially in the temporal and frontal lobes of the brain. Hormones from the hypothalamus and pituitary gland regulate the amount of estrogen and progesterone circulating in a woman's body. Estrogen and progesterone levels change throughout the menstrual cycle. The easiest way to determine if seizures are related to the menstrual cycle is to record the occurrence and type of seizures and the day menstruation starts on a calendar. Progesterone therapy may be helpful for some women with catamenial seizures.
  • 13 - Menopause and epilepsy
    pp 131-142
    • By Fariha Abbasi, Neurological Center, 900 Cox Road, Gastonia, NC 28054, USA, Allan Krumholz, Department of Neurology, University of Maryland Medical System, 22 South Greene Street, Baltimore, MD 21201, USA
  • View abstract

    Summary

    This chapter reviews the issues women face regarding menopause and discusses what is known about the influence of menopause on epilepsy and seizures. Hormones such as estrogen and progesterone influence the brain at birth and help establish sexual differentiation between men and women. The low estrogen levels that are a part of menopause affect many different organ systems in the body. The chapter discusses some of the reported adverse effects of menopause: vascular autonomic changes, heart disease, bone disorders and osteoporosis, vaginal and urinary tract problems, sleep disturbances, and emotional problems. To assess the potential influences of menopause on women with epilepsy and seizures, one needs to consider several issues: the effect of menopause on the frequency and severity of seizures; the possibility that antiepileptic medications will complicate menopause; and whether hormone replacement therapy (HRT) during menopause is appropriate for women with epilepsy.
  • 14 - Reproductive health for women with epilepsy
    pp 145-151
    • By Martha J. Morrell, Professor of Clinical Neurology, Columbia University; Director of the Columbia Comprehensive Epilepsy Center, New York Presbyterian Hospital
  • View abstract

    Summary

    This chapter discusses some of the reproductive disturbances in women with epilepsy and points out signs and symptoms that women should report to their health-care providers. Reproductive health disturbances described in women with epilepsy include menstrual abnormalities such as amenorrhea (not menstruating), oligomenorrhea (menstrual cycle length greater than 35 days), and metrorrhagia (irregular menstrual cycle with excessive menstrual flow). Menstrual cycle abnormalities, polycystic ovaries, and disruption in pituitary and ovarian hormones may cause infertility. Women with epilepsy appear to be at risk for anovulatory cycles, polycystic ovaries, and disturbance in the hypothalamic, pituitary axis, the system that regulates the menstrual cycle and ovarian production of female sex steroid hormones. Electrical epileptic discharges in the brain may alter pituitary hormones and abnormally stimulate the ovaries. Changes in ovarian hormones caused by antiepileptic drug interactions could also cause anovulatory cycles. Finally, the antiepileptic drug valproate may specifically increase the risk.
  • 15 - Sexual dysfunction in epilepsy
    pp 152-163
    • By Martha J. Morrell, Professor of Clinical Neurology, Columbia University; Director of the Columbia Comprehensive Epilepsy Center, New York Presbyterian Hospital
  • View abstract

    Summary

    This chapter discusses some of the sexual symptoms experienced by some people with epilepsy and reviews appropriate diagnostic tests and treatments. To help understand why sexual life might be impacted by epilepsy, it discusses the biology of sexuality. Sexual dysfunction may arise in as many as one-third to one-half of men and women with epilepsy. The dysfunction appears to occur because of disruption to the brain regions controlling sexual behavior, disturbance of the hormones supporting sexual behavior, and the effects of antiepileptic drugs (AEDs). Specific therapies can be directed toward specific sexual problems. Treatment will focus on seizure control, including alternative medications and the provision of directed therapies, which may include biofeedback, behavioral medicine techniques, newer medications to improve physiological sexual arousal, and more traditional couple or individual counseling. In sexual therapy, couples practice sexual exercises according to a schedule established by the therapist.
  • 16 - Bone health in women with epilepsy
    pp 164-170
    • By Robert Marcus, VA Palo Alto Health Care, 3801 Miranda Avenue, Palo Alto, CA 94304, USA
  • View abstract

    Summary

    Some people with epilepsy have an increased risk for a condition of the skeleton called osteoporosis. This chapter clarifies the nature of this relationship, outlines its possible causes, and discusses current approaches to treatment. The problem of osteoporosis in people with epilepsy has long been assumed to be related to antiepileptic medications. However, it is important to point out that other aspects in the lifestyle of children and adults with epilepsy may themselves contribute to deficits in bone acquisition and maintenance. Women are more likely to develop osteoporosis than men because women have smaller body size and because they experience a sharp reduction in estrogen levels after menopause. For women over the age of 40 or those who are menopausal, bone density scans can be performed periodically to monitor bone health. This is especially recommended for women with a family history of osteoporosis.
  • 17 - Psychiatric complications in epilepsy
    pp 171-194
    • By Laura Marsh, Department of Psychiatry, Johns Hopkins University School of Medicine, 600 N. Wolfe Street, Baltimore, MD 21287, USA
  • View abstract

    Summary

    This chapter identifies environmental causes as well as biological triggers for psychiatric symptoms in people with epilepsy. It stresses that these symptoms should receive medical attention, and discusses some of the safe and effective treatments that are available. The chapter focuses on interictal depression, other interictal psychiatric disorders, and ictal and peri-ictal psychiatric disturbances. Interictal depression and other interictal psychiatric disorders include adjustment disorders, major depression, dysthymic disorder, bipolar disorder, atypical depressive syndromes, medication-induced mood disorders, anxiety disorders, and psychotic disorders. The development of psychiatric symptoms in people with epilepsy appears to be associated with a number of biological, psychological, and social factors. Psychiatric symptoms caused by antiepileptic drugs (AEDs) are treated by lowering the medication dose or changing to a different AED. Mood stabilizers are used to treat bipolar disorder and conditions with mood instability. With proper treatment, psychiatric disturbances can substantially improve or even completely resolve.
  • 18 - Family planning and contraceptive choice
    pp 197-202
    • By Pamela M. Crawford, Department of Neurology, Special Centre for Epilepsy, York District Hospital, Wigginton Road, York YO3 7HE, England
  • View abstract

    Summary

    This chapter stresses that each woman must know whether her medical therapy can interfere with hormonal contraception. There is a variety of contraceptive methods from which to choose. These fall into two main groups: hormonal and nonhormonal methods. Epilepsy and its treatment do not alter the effectiveness of any of the nonhormonal methods of birth control. These nonhormonal methods include the intrauterine contraceptive device (IUD), barrier methods, the rhythm method and other methods of 'natural' family planning with or without spermicides, and sterilization. Hormonal methods involve taking the combined oral contraceptive pill, (which contains two hormones, an estrogen and a synthetic form of progesterone called a progestogen), or the progesterone-only pill ('mini' pill), or long-acting preparations such as medroxyprogesterone (Depo-Provera) injections or a depot hormonal implant (Norplant). Nowadays, many neurologists discuss the issue of contraception with women before starting a drug to treat their epilepsy.
  • 19 - Pregnancy risks for the woman with epilepsy
    pp 203-214
    • By Mark Yerby, North Pacific Epilepsy Research, 2455 Northwest Marshall Street, Portland, OR 97210, USA, Yasser Y. El-Sayed, Department of Gynecology and Obstetrics, Stanford University Medical Center, Standford Hospital, 300 Pasteur Drive, Stanford, CA 94305
  • View abstract

    Summary

    Women with epilepsy may be especially concerned that the risk of pregnancy complications and birth defects could be higher because of seizures and because the baby will be exposed to antiepileptic drugs (AEDs). Most women with epilepsy can become pregnant and have healthy children. However, their pregnancies are subject to a greater risk of complications, difficulties during labor, and a risk of adverse outcomes. Women with epilepsy are at greater risk for other obstetric complications during pregnancy. Fetal death appears to be as common and perhaps as great a problem as congenital malformations and anomalies. A hemorrhagic phenomenon has been described in the infants of mothers with epilepsy. Perinatal lethargy, irritability, and feeding difficulties have been attributed to intrauterine exposure to AEDs, especially to phenobarbital and phenytoin. Risks can be minimized by the preconceptual use of multivitamins with folate and by using AED in monotherapy with the lowest effective dose.
  • 20 - Risks of birth defects in children born to mothers with epilepsy
    pp 215-221
    • By Aline T. Derdiarian, California, USA, Yasser Y. El-Sayed, Department of Gynecology and Obstetrics, Stanford University Medical Center, Standford Hospital, 300 Pasteur Drive, Stanford, CA 94305
  • View abstract

    Summary

    This chapter talks about gynecological and obstetrical care of women with epilepsy. Birth defects include major congenital malformations and minor anomalies. Major malformations are somewhat more common in children born to mothers with epilepsy, even if those mothers did not use antiepileptic drugs (AEDs) during pregnancy. There are several ways in which AEDs can cause birth defects. Folic acid deficiency is a probable cause of birth defects in children exposed to AEDs in utero (as fetuses). With careful preconception and frequent prenatal evaluations, women with epilepsy can minimize their risks for birth defects and maximize their potential for good outcomes. Multivitamins with folic acid may reduce the risk of major malformations and minor anomalies. Other preventative measures include routine and special laboratory studies, high-level ultrasound at 16-18 weeks' gestation and, if indicated, amniocentesis.
  • 21 - Neurocognitive outcome in children of mothers with epilepsy
    pp 222-227
    • By Kimford J. Meador, Department of Neurology, Georgetown University Hospital, 3800 Reservoir Road, NW, Washington DC 20007, USA
  • View abstract

    Summary

    This chapter reviews what one knows about the neurological and cognitive effects of antiepileptic drugs (AEDs) on the developing fetus. The combined effects and interactions of genes and the environment determine neurodevelopment. Thus, a child's neurodevelopment is affected by that child's inheritance, the mother's age at the time of pregnancy, the child's birth order, the mother's health during the pregnancy, drug exposure, obstetric complications, the nutritional status of the mother and child, childhood illnesses, social and economic status of the family, the mother's and father's educational levels, as well as the child's educational opportunities. A variety of factors may contribute to the neurodevelopmental deficits observed in the children of women with epilepsy. Children born to mothers with epilepsy have a slightly higher risk of neurodevelopmental difficulties, which can be reduced by good health practices, good seizure control, and using only as much antiepileptic medication as is necessary for seizure control.
  • 22 - Parenting for women with epilepsy
    pp 228-234
    • By Mimi Callanan, Department of Neurology and Neurological Sciences, Stanford University Medical Center, Stanford Hospital, 300 Pasteur Drive, Stanford, CA 94305, USA
  • View abstract

    Summary

    This chapter discusses the seizure-related risks of parenting a small child. It offers reasonable and helpful suggestions to make a home environment that ensures child's safety. There are several special safety issues for pregnant women with epilepsy. For the most part, women with epilepsy are no longer discouraged from marrying or having children. However, they and their health-care providers are still concerned that seizures could interfere with the mother's ability to provide care for her infant or young child. Children should be educated about epilepsy and know how to respond if their mother has a seizure. Parenting is one of the most exciting, fulfilling, and stressful experiences in one's life. Although women with epilepsy have special issues that need to be addressed and given thought prior to having children, they too can experience the many challenges and rewards of motherhood.

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