Women and Epilepsy
Recent studies have shed new light on our understanding of the particular concerns of women with epilepsy. These findings offer specific information on how seizure disorder relates to the various phases of a woman's life, from puberty to menopause.
Adolescence
Adolescence can be an emotional, psychological, social and physical roller coaster ride. It is a time of establishing one's self-identity and achieving a measure of independence. Epilepsy can complicate this important time of life. Although many young women with epilepsy adjust well, some feel isolated and very different from their peers. Parental overprotectiveness can have adverse effects on the adolescent's health by provoking rebellious behaviour, such as not taking medication. Young women and their parents need to negotiate appropriate levels of independence given the severity seizures.
Adolescence is also characterized by emerging concerns about sexuality. Young women need accurate information about normal sexual development, and if problems surface, these should not be viewed purely as a consequence of epilepsy.
Concern about dating, relationships, marriage and pregnancy, and how these relate to epilepsy, are often significant worries of adolescent females. It is important to reassure adolescent women that epilepsy does not define who they are -- it is only one aspect of a multi-faceted life. Having epilepsy does not exclude a young woman from having a well-rounded and active life.
Menstruation
For over one hundred years, the relationship between seizures and menstruation has been examined. Studies have shown that fluctuations in females hormones prior to and during menstruation may elevate seizure frequency in some women. In a small percentage of women catamenial seizures (seizures which are related to menstruation) may occur only during the days just before their period, or during the period itself. Higher ratios of estrogen to progesterone may increase seizure frequency. Water retention, electrolyte imbalance, and even poor sleep are also contributing causes.
The connection between menstruation and seizures has been demonstrated in women with simple partial, complex partial, and generalized tonic-clonic seizures. However different types of seizures are associated with different phases of a woman menstrual cycle. For example, with absence seizures have more seizures during days 16 to 28 of the average menstrual cycle and the least during their periods. Women with partial seizures, on the other hand, tend to have fewer seizures during the 16 to 28 day phase and more just prior to ovulation and during menstruation.
Menstrual disorders, such as amenorrhea (absence of menstruation), oligomenorrhea (scanty menstruation), cycles of irregular length and an absence of changes in the cervical mucus have been reported in woman with epilepsy, especially those who have complex partial seizures.
Mood swings, often pronounced prior to and during menstruation, can be further aggravated by anticonvulsant medication. If mood swings become problematic, it is recommended that woman discuss adjustments to medication with her physician.
Relationships and Disclosure
The question of when to tell someone that you have epilepsy can be a difficult decision. It may be less stressful to share this information early in a relationship. However, having epilepsy is not the most important fact about you. If your epilepsy is well-controlled, this information could wait until you decide it is relevant to your relationship.
Birth Control
Before deciding to use oral contraceptives, women who take anticonvulsant medication should consult with their physician. The effectiveness of birth control pills may be impaired when women take certain types of anticonvulsants. Breakthrough bleeding can occur and the effectiveness of oral contraceptives can be lessened. However, not all anticonvulsants interact negatively with birth control pills. Your physician may recommend an oral contraceptive with a lower estrogen content, or suggest alternative birth control methods.
Prepregnancy Planning
Fertility
Lower fertility rates, documented over the past 50 years, have been found in women and men who have epilepsy.
Libido
Diminished sexual interest can be a side effect of certain anticonvulsant medications. Both men and women can suffer decreased libido, depending on the medication they are taking and how their bodies interact with it. Diminished libido is more frequently reported with the use of phenobarbital or primidone as opposed to phenytoin or carbamazepine.
Pregnancy
The Role of Heredity
Epilepsy is seldom an hereditary condition. In a very small number of cases, certain brain wave patterns associated with a particular seizure type are hereditary. If one parent has this type of genetic epilepsy, then the chances of a child developing epilepsy are approximately 10 in 100. (Children borne to parents who do not have epilepsy have 1 or 2 chances in 100 of developing epilepsy at some point in their lives.) Genetic testing may be suggested by your physician, if pertinent.
If both parents have epilepsy that is hereditary in nature, the risk is greater and the child has a 1 in 4 chance of developing epilepsy. It is reassuring to note that even if a child does inherit this type of epilepsy, it can be controlled very successfully with medication. Epilepsy does not impair the normal development of intelligence and personality.
Seizures during Pregnancy
Approximately 50% of all women with epilepsy have increased seizure frequency during pregnancy. Slightly less than half have no particular change in seizure frequency and a small percentage have reduced numbers of seizures during pregnancy. Reasons for these shifts in seizure frequency include dramatic swings in the hormone levels during pregnancy, changes in body fluid and salt retention, and alterations in the way the body absorbs, distributes and eliminates anticonvulsant drugs. Changes in metabolism usually return to normal around 3 months after delivery.
It is vitally important for women to see their physician regularly during pregnancy and 3-4 months postpartum so that anticonvulsant drug levels can be carefully monitored and adjusted as necessary. More frequent blood level measurements are necessary due to the mother's extra body weight and fluid retention during pregnancy.
During the third trimester, a woman often experiences loss of sleep or poor sleep. Altered sleep patterns can sometimes cause an increase in seizure frequency. A pregnant woman should try to get as much sleep as she can, and rest whenever possible.
Women are naturally concerned about the effect of seizures on the fetus. Most available information indicates that the number of seizures during pregnancy has little effect on the baby, except in the rare case of uncontrolled multiple seizures known as status epilepticus.
Status epilepticus is life-threatening
both to the mother and the baby.
It is a serious medical emergency.
Possible Complications during Pregnancy
Women with epilepsy are considered to have high risk pregnancies. High risk indicates that there is an increased likelihood of greater-than-average risks to the mother, the fetus or both. There are several complications which occur more often to women with epilepsy, one of which is know as eclampsia.
Eclampsia is a serious complication of pregnancy which, in its final stages, can result in brain hemorrhage, coma and death. Pre-eclampsia is an earlier stage of this vascular disease. Weight gain and salt retention can lead to the development of pre-eclampsia; a physician will carefully monitor a woman's blood pressure and check for protein in her urine - two indicators of the condition. Initial symptoms can include headache, hyperirritability and edema (swelling) of the body and face. At the first sign of pre-eclampsia, a physician will prescribe preventative measures, including sedation, rest and the use of specific antihypertensive drugs.
Placental problems figure more prominently in women with epilepsy. Premature separation of the placenta (abruptio placentę) may occur, and the accompanying vaginal hemorrhage may severely inhibit the nutrition of the developing fetus. Other complications involving the placenta include early spontaneous rupture of the membranes and, conversely, an increased need to rupture the membranes artificially in order to begin delivery.
Anti-Epileptic Drugs and the Developing Fetus
The birth of a normal baby without birth defects is a primary concern for all parents. Since all drugs present a possible danger to a developing fetus, women with epilepsy who are taking anticonvulsants are understandably concerned that anticonvulsant medication may pose possible risks to their baby's development.
To put birth defects into perspective, it is helpful to look at the statistics.
In the general population of all pregnant women, 2 in every 100 women will give birth to a baby with a birth defect.
In pregnant women who had epilepsy as children, but have now outgrown it and are not currently taking anticonvulsants, 4 in every 100 women will give birth to a baby with a birth defect.
Pregnant women who are controlling their seizures with anticonvulsants will have 6 to 10 chances in 100 of giving birth to a baby with a birth defect.
These figures indicate that women with epilepsy have at least a 90% chance of producing a perfectly normal baby.
The type of birth defects most commonly found in babies who have been exposed to anticonvulsant medications include short fingertips, short noses, broad-set eyes and prominently-arched eyebrows. More serious complications can include cleft palates or congenital heart disease. Both of these defects may be improved with surgery. Amniocentesis cannot usually detect any of these malformations.
Monotherapy (the use of only one drug) has been shown to reduce birth defects in offspring of women with epilepsy. Therefore, prior to planned conception, women should consult with their physicians to reduce the number of anticonvulsants they take.
Upon becoming pregnant, a woman may be tempted to stop taking medication in order to protect the baby from side effects. However, withdrawing medication can be the cause of prolonged seizures (5 minutes or longer) during which the fetus is deprived of oxygen.
Stopping medication in this way poses a risk
greater than the effects of the drugs themselves.
Nutrition
Certain anticonvulsants deplete the body of folic acid, an important vitamin needed by the developing fetus. Therefore, in partnership with a physician, a women with epilepsy should ensure that her diet is adequately supplied with folic acid.
A shortage of zinc, again due to the effects of anticonvulsants, has been implicated in fetal malformations, including cleft palate. Because zinc deficiency is not physically obvious, a pregnant woman should have intensive nutritional counseling prior to and during pregnancy. Supplements up to twice the normal daily requirement could be recommended safely, depending on the advice of a nutritionist.
A unique bleeding problem in babies whose mothers take anticonvulsants may occur usually in the first 24 hours after birth. This can be prevented by the mother taking vitamin K orally during the last 2 weeks of pregnancy. The regular dosage of vitamin K routinely given to a baby will not be adequate to prevent this phenomenon.
Labour and Delivery
Labour itself will not precipitate a seizure. During labour, however, a woman may miss doses of anticonvulsants. Because certain anticonvulsants have shorter half-lives, a women could have low levels of anticonvulsant medication in her system during labour, thereby putting her at greater risk of a seizure. A woman should consult with her physician during prenatal visits about taking medication during labour.
Breastfeeding
Research indicates that babies do not suffer any harmful effects from traces of anticonvulsant medication found in breastmilk. The physiological and psychological benefits of breastfeeding, both to the mother and to the child, are significant and if a women wishes to breastfeed she should be encouraged to do so. Any concern should be discussed with a physician during prenatal visits.
Babies who are bottle fed, and therefore not receiving the amount of anticonvulsant medication they received in utero, may experience temporary withdrawal symptoms such as tremor and agitation.
Practical Concerns for Women with Small Children
The safety of babies and small children can be a significant concern to women with epilepsy. Women who experience an aura before a seizure can prepare themselves and their children for the seizure. However, those whose seizures occur irregularly and without prior warning are at a considerable disadvantage.
Recommended Safety Precautions
- When bathing a baby, it is preferable to wash the baby on a mat in the crib, with a bowl of water outside the crib. If you are alone, a baby should not be bathed in an adult or baby bath.
- A well-padded easy chair is a safe, comfortable place to breast- or bottle-feed a baby. If a rocking chair is used, pad the arms with towels and use extra pillows to cushion the child. The baby can also be fed while the mother is lying on her side.
- Ensure that there is a portable crib or playpen on each level of the home.
- Make sure that medications are safely locked away, out of a young child's reach. When the child can understand, explain why you take the medication and tell him or her about any seizure you may have. Children can learn to help you and help care for younger siblings during a seizure.
- Secure an outside play area with a sturdy fence and a locked gate. If taking a young child for a walk in a stroller, attach a safety harness to the child. Discreetly affix a tag or sticker on the stroller with the baby's name and the name of a relative or emergency caregiver to contact in the event of a seizure. If taking a toddler for a walk without a stroller, continue to use a wrist harness until the child is old enough to fully understand that s/he must stay close to you if you have a seizure.
General Recommendation
If possible, inform neighbours of your seizure disorder, describing what they can do to assist you, should the need arise. Post emergency phone numbers in a prominent location where neighbours or your children can obtain them quickly.
Many women with epilepsy feel vulnerable, especially when they have the additional responsibility of caring for children. Specially-trained service dogs can provide invaluable assistance and protection. Contact Epilepsy Ontario or your local epilepsy chapter for further information.
Epilepsy and Menopause
There have been various findings on the effects of menopause on epilepsy. Studies indicate that seizure frequency often decreases, especially if seizures had been related to menstruation. Findings also suggest that epilepsy improves during menopause if epilepsy started later in life, and if seizures have always been infrequent. Sometimes epilepsy may completely disappear.
Some increases in the number of seizures have been found in women who have frequent tonic-clonic or complex partial seizures. During menopause, fluid retention may also increase seizure frequency. Occasionally, for unknown reasons, epilepsy may occur for the first time at menopause.
Studies indicate that women who experience complex partial seizures have a higher rate of premature menopause than those who have other types of seizures.
To date, there is little data with which to evaluate the impact of hysterectomy, which surgically induces menopause, on the frequency of seizures.
