Something I had written back in college and find interesting to myself. I thought I would share this report with you all!
Epilepsy and women is of particular interest to me because I became diagnosed with epilepsy at the age of 5. My family and I were on a trip in Arizona for my brother’s soccer game. We were making a stop to get some food, and when I was getting out of the car, I started losing my balance and did not know what was happening. My parents thought that I just had an ear infection, but the situation did not get better. In fact, it happened more and more frequently in the days to follow. When we returned home from the trip, my mom made an appointment with a neurologist and I was diagnosed with epilepsy. As I grew into my teen years, the severity and frequency of my seizures started worsening. Meanwhile, the doctor tried an experiment on me by trying all different medications. At one point I stopped breathing when they were gradually reducing my medications in an attempt to identify the focal point of the seizures. As a result, the doctors told me that my seizures were coming from both sides of the brain, which meant I was not a good candidate for brain surgery. My parents wanted a second opinion, so the doctors recommended that I go to Miami Children’s Hospital of Florida, and the doctors there, after many tests, decided that I was good candidate for brain surgery, after all. Finally, in August 1998 the neurosurgeons performed a frontal occipital lobotomy and a dissection in the parietal area.
Ever since my surgery I have been able to maintain a normal life. Over the nine years that I have been seizure free, I have achieved a lot. Before, when I was having seizures everyday, I could not recall what happened from day to day and I cannot remember my past. Although I came out of surgery knowing everything academic I had learned from my past, I still had poor writing ability, study skills, and more. Everyday, I am still learning something new because it takes longer for me to learn certain skills than my peers. If I did not have the support I have for school, I would not be where I am now. The only downfall to my surgery was that I would have a minimal loss of peripheral vision, which prevents me from driving.
Knowing what it is like to be a woman with epilepsy (WWE), I am particularly interested in helping not only WWE, but others, as well, with this disorder. I believe that it is an important topic that is often ignored by the medical profession and needs to be better recognized. In this paper I will discuss stages in a woman’s life as she is affected by epilepsy. These 3 stages include puberty, pregnancy, and menopause.
Epilepsy in women raises special health concerns, most importantly those related to reproduction. “The Epilepsy Foundation (2007) defines epilepsy as a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When someone has epilepsy, this normal pattern may be interrupted by intermittent bursts of electrical energy that are much more intense than usual. They may affect a person's consciousness, bodily movements, or sensations for a short time.” “Approximately 1% of the population has epilepsy, making this one of the most common chronic health conditions affecting reproductive-aged women” (Morrell, 2002, p. 1489).
WWE often feel that their concerns about seizures and treatment are not sufficiently recognized or addressed. They often suffer from discrimination and psychosocial difficulties, problems that are often not validated by their health-care professionals. Furthermore, WWE themselves may not even recognize all of the specific ways in which the disorder affects their lives, their health, and their families, at least in part, because many of these women have been poorly informed or misinformed about the effects of the disorder. Health-care providers need to overcome these barriers as well as the social and cultural barriers that may inhibit people from discussing issues relating to sexuality, reproduction, and other “women’s concerns.” In my case, my doctors were well informed about the effects of epilepsy on women, so I was fortunate.
“More than one million women and girls in the United States are living with epilepsy” (Haran, 2004, p. 1). Medications taken by these women can affect mood or cognitive function. “The type and location of the seizure may also influence learning style and direct the focus of doctor/patient discussions. For example, the discussion might focus on sexuality, fertility, and reproductive/endocrine function for a woman with limbic seizures, whereas a woman with uncontrolled generalize tonic-clonic seizures may require more counseling on safety during pregnancy. Altered mood states associated with seizure medications or concomitant psychiatric disorders can affect the ability to learn, communicate, and follow instructions” (Shafer, 1998, p. S39). Medications given to WWE should be monitored carefully to make sure they are not creating fluctuating mood swings and/or affecting the women’s ability to function.
“WWE face a number of unique issues that begin at puberty and continue throughout the life cycle” (Shafer, 1998, p. S40). Unfortunately, it has not been well accepted in American society that WWE can bear children and be capable parents. “Cultural and societal norms play an important role because views of both women and epilepsy differ from one society to another” (Shafer, 1998, p. S39). For example, Shafer points out (1998) that having epilepsy may prevent a woman from driving, which is often a major cause of social isolation. That is exactly what happened to me. In American society, where driving is a necessity and public transportation is not dependable, the inability to drive greatly hinders women, like me, who need the flexibility and independence that a driver’s license provides.
Puberty is an important time to review the diagnosis of both epilepsy and the epilepsy syndrome because of the implications and decisions that may need to be made regarding Antiepileptic Drug Treatment (AED). “Advice on relationships, contraception, and the consequences of AED treatment, employment, driving, and psychosocial issues such as alcohol use needs to be provided at this time” (Crawford, 2005, p. 118). This is an important time for counseling to take place, not only for these reasons, but for any teenager who is already going through hormonal changes.
“In many ways, hormones influence epilepsy, and epilepsy influences hormones” (Cramer, Gordon, Schachter, & Devinsky, 2007, p.160). Haran states (2004) that, in general, estrogen promotes seizures and makes seizures worse, and progesterone protects against seizures. The most common pattern is that women may have seizures just before the onset of menstrual bleeding because progesterone levels drop, so women aren't protected against seizures. This is a time of a teenager’s life where she will experience many bodily changes. These changes may affect her moods, relationships with her family, and choices she makes, as well as her seizure patterns.
“Catamenial epilepsy is a term used to describe patterns of seizures that occur in association with the menstrual cycle. Catamenial epilepsy affects between 35% and 70% of women with epilepsy, depending on the definition used. It is difficult to know the precise number of women with catamenial epilepsy, partly because women may either under- or overreport this phenomenon and partly because the definition has not been consistent across studies” (Cramer et al., 2007, p. 162). However, according to Morrell (2002), thirty to fifty percent of WWE experience catamenial seizures. Seizures are more likely to occur near the time of menstrual flow because of progesterone withdrawal and with the estrogen surge at ovulation. For many women, seizures are more random and severe during anovulatory cycles because the ratio of estrogen to progesterone remains high. As Cramer states (2007), there are two patterns of catamenial seizures have been described: premenstrual (estrogen and progesterone levels are low) and inadequate luteal phase (inadequate progesterone) catamenial epilepsy. Hormones play a big part in a women’s seizure activity when it comes to having catamenial seizures and it seems that women are still unsure whether their seizures are linked to their menstrual cycle or unrelated seizures.
While puberty can affect teenagers’ seizure activities and their hormonal levels, it can also affect teenagers’ moods. Kanner states (2006) that depression is the most common comorbid psychiatric disorder in patients with epilepsy. Yet, it remains under-recognized and untreated in a significant number of patients. “In a survey of neurologists, results show that 80% of all doctors do not routinely screen for depression in patients with epilepsy. It is common for clinicians to presume that evaluation and management of comorbid psychiatric disorders in epilepsy patients are the responsibility of psychiatrists, which in practicality is unrealistic, given the limited (and often nonexistent) availability of psychiatric services” (Kanner, 2006, p. 141). One would think that this would be an important part of a routine checkup of a WWE, especially at this stage in her life, yet it is not the case. To complicate things, there are not many psychiatrists that specialize in neuropsychiatry or have the background knowledge that a neurologist might require to treat a patient with epilepsy. Epilepsy is no longer questioned as a risk factor for depression, and its impact should be considered in any WWE with those symptoms.
As a woman approaches reproductive age, she will have other concerns that she should seek medical counseling for, such as pregnancy. Haran states (2004) that the American Academy of Neurology suggests that women can still use oral contraceptives, but they need to be on the higher dose pill and have at least 50 micrograms per day of estrogen in their pill. “Not only that, but many of the medications that WWE use to treat seizures are broken down by the liver and are metabolized, which happens to be the same system that breaks down the effectiveness of birth control pills. Many of the medications WWE use to treat seizures are metabolized and broken down by the liver, and that happens to be the same system that breaks down birth control pills” (Haran, 2004, p. 2). Birth control pills are not only used for protection against pregnancy, but can also help a WWE control her mood stability.
“Regarding pregnancy, important issues facing WWE include reproductive functioning, family planning, contraception, fertility, teratogenicity of AED’s, and breast-feeding. Family planning goes beyond issues of contraception to include basic issues of parenting. Pregnancy should be discussed before conception so that problems can be anticipated and possibly prevented, and so that a management plan can be coordinated” (Shafer, 1998, p. S40). Morrell expresses (2002) that pregnancy in a woman who has epilepsy raises several concerns, including the risk of more frequent seizures and changes in antiepileptic drug levels, among other things. This is an important time for a WWE to sit down with her neurologist and discuss the concerns she might have and become better educated on the issues that might affect her pregnancy.
Not only are there risks for the pregnant woman herself, but there are risks for the unborn baby. According to Morrell (2002), WWE have a 4 to 8 percent chance of giving birth to a child with a major defect, as compared with 2 to 4 percent in the general population. “Malformation associated with exposure to the older antiepileptic drugs include cleft lip and palate and ventricular septal defect. Most malformations develop at an early stage in pregnancy, often before the woman knows she is pregnant” (Crawford, 2005, p.120). There is also a chance for the unborn baby to develop a learning disability in the future.
Other risks that might affect an unborn baby include increased seizure activity. Zahn states (1998) that generalized tonic-clonic seizures are potentially harmful to both mother and fetus. There is no evidence that simple partial, complex partial, or absence seizures result in increased risk for pregnancy loss or injury to the fetus. The most recent report indicates that 15% of women will experience reduced seizure control. This is an important time for the pregnant woman to keep track of how many and what type of seizures she is having, so she will know if she is harming the fetus in any way.
“Preconception counseling should be available to all WWE who are considering pregnancy. WWE should be aware of a number of issues relating to future pregnancy, including methods and consequences of prenatal screening, genetics of their seizure disorder, teratogenicity of AED’s, folic acid and vitamin K supplements, labor, breast feeding, and childcare. The main goal of preconception counseling is to ensure that women face pregnancy with a minimum of risk factors, fully aware of any risks and benefits of treatment and able to make informed decisions about the pregnancy” (Crawford, 2005, p. 120). Unfortunately, not many WWE realize that the medications they are on may affect an unborn baby or that being an epileptic has any impact on being pregnant.
According to Cramer (2007), WWE have a greater risk of infertility than women in the general population. “Fertility rates of WWE also have been found to decrease with age at a greater rate than in women without epilepsy. On the other hand, AED’s have at least a 6% failure rate per year for oral hormonal contraceptive pills, and some birth control pills may be totally ineffective in women who take AED’s. Another aspect that might affect conception is that, up to one third of WWE have an abnormal menstrual cycle length (less than every 23 days or more often than 35 days)” (Morrell, 2002, p. 1490). Fortunately, however, as Zahn reports (1998), over 90% of WWE who become pregnant deliver healthy babies.
“A notably large number of WWE, however, have reported some degree of sexual and/or reproductive dysfunction. Sexual dysfunction may include difficulty with libido, arousal, and orgasm. Psychosocial and developmental impairment may be responsible for sexual dysfunction in some WWE. In terms of psychosocial factors, clinical depression and anxiety regarding seizures during sexual activity are two of the possible contributors to sexual dysfunction” (Cramer, et al., 2007, p.164). Specifically, some women might be afraid of having seizures during the time of sexual relations, which can be both embarrassing and disruptive. Some AED’s, particularly antidepressants and drugs that increase serotonin levels, may adversely affect sexual function. Finally, Cramer states (2007), careful consideration of AED therapy and a possible change in AED therapy may be considered. As more and more WWE carry on normal sexual activity and become pregnant, there are many more concerns related to sexual performance, pregnancy, and potential parenthood that need to be addressed by the medical community.
Like most women, WWE should be encouraged to breastfeed their babies; however, studies show that WWE are less likely to choose to breastfeed and are more likely to feed for a shorter duration compared with other mothers for various reasons. “Although there is much anxiety about the possible risks to a child from the mother’s epilepsy, there is little published evidence to confirm increased danger to the infant” (Crawford, 2005, p. 122).
Women should enter pregnancy having complete seizure control or as few seizures as possible. However, if the woman wants to have a family in the future and does not have full seizure control, doctors cannot prevent her from having a child. Her medications, though, will need to be carefully monitored and possibly changed. “If a patient has been seizure free for at least 2-3 years and does not have juvenile myoclonic epilepsy, consideration may be given to withdrawing AED’s to reduce the potential risk. As with all women contemplating pregnancy, advice should be given about maintaining good general health in relation to exercise, diet (including folic acid supplements), smoking, and alcohol consumption” (Crawford, 2005, p. 120).
As the years of a woman’s life continue, there are chances that a woman’s seizure patterns will change as she gets into her menopausal stage. “Seizure control may also change during perimenopause because of fluctuations in estrogen and progesterone. Although 30 percent of women experience improvement in seizure control after menopause, another 30 percent describe a worsening in seizure control, many after beginning hormone replacement therapy with unopposed estrogen” (Morrell, 2002, p. 1490). Crawford states (2005) that menopause occurs significantly earlier in women with a high seizure frequency. During menopause, about 40% of women report worsening of their seizure disorder, 27% improve, and a third have no change. However, research does not identify what causes menopause to develop earlier in WWE than in other women who do not suffer from this disorder. “The interactions of puberty, menarche, menstruation, and pregnancy with epilepsy have been studied and reviewed by several investigators. Still, little is known about the associations of epilepsy with the important female hormonal phase called menopause” (Abbasi, Krumholz, Kittner, & Langenberg, 1999, p. 205). There is a need for further study of the years of menopause to determine what causes the seizures to worsen in some women and decrease in others.
“Because the American woman can expect to live an average of 30 years after menopause, she will spend approximately one third of her life after ovarian failure. Many WWE will therefore live many years after menopause. Recent studies indicated that the incidence of epilepsy in the older population has been underestimated and increases considerably after age 50 years” (Abbasi, et al., 1999, p. 205).
“Due to the risk of osteoporosis associated with aging and with the use of some AED’s, WWE must be carefully counseled on seizure first aid and general safety management to decrease the risk for falls and fractures. Medication counseling should include informing the patient about the potential for drug interactions with multiple medications and strategies to aid compliance and decrease drug toxicity” (Shafer, 1998, p. S41). As a WWE begins to age, it is very important that she continues to receive counseling. Not only is her body aging, but also her seizures may be increasing or deceasing, and she will need to know what to do if a problem occurs.
“All WWE, regardless of age, have a right to timely, accurate, culturally sensitive information that will help them manage their seizures and their lives successfully” (Shafer, 1998, p. S44). Crawford explains (2005) that this information will provide them with knowledge on the life-long health issues related to epilepsy. These include the specific aspects of hormonal changes throughout puberty, pregnancy, and menopause. Therefore, the impact of epilepsy on women is far more consequential than that on men. Epilepsy affects sexual development, menstrual cycle, aspects of contraception, and issues of fertility and reproduction in ways that are unique to women. The use of information handouts can save time in educating the patient about important issues but is no substitute for open dialogue and two-way communication. As for myself, being able to communicate with professionals and have information accessible to me has helped me know what I need to do for myself to be a healthy woman who is diagnosed with epilepsy.
References
Abbasi, F., Krumholz, A., Kittner, S., & Langenberg, P. (1999). Effects of menopause on seizures in women with epilepsy. Epilepsia, 40, 205-210.
Cramer, J., Gordon, J., Schachter, S., & Devinsky, O. (2007). Women with epilepsy: Hormonal issues from menarche through menopause. Epilepsy & Behavior, 11(2), 160-178.
Crawford, P. (2005). Best practice guidelines for the management of women with epilepsy. Epilepsia, 46, 117-124
Epilepsy Foundation (2007). Epilepsy foundation: Frequently Asked Questions. Retrieved 12/08/2007, from Frequently Asked Questions Web Site: http://www.epilepsyfoundation.org/about/faq/
Haran, C (2004). Unique concerns for women and girls with epilepsy. Advances in Neurology, Retrieved 10/30/2007, from http://www.advancesinneurology.com/focus_article.asp?f=epilepsy&c=epilepsy_women&b=ain&spg=SHO
Kanner, A. (2006). Depression and epilepsy: A new perspective on two closely related disorders. Epilepsy Currents, 6(5), 141-146.
Morrell, M. (2002). Epilepsy in women. American Family Physician, 66(8), 1489-1494.
Shafer, P. (1998). Counseling women with epilepsy. Epilepsia, 39, S38-S44.
Zahn, C. (1998). Neurologic care of pregnant women with epilepsy. Epilepsia, 39, S26-S31.
