Epilepsy - Outlook and Effects

In one study of adult-onset epilepsy, it was discovered that after one year of treatment, 70% of patients experienced complete control of their seizures, 14% had occasional seizures, and 16% were unable to control the seizures.

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Effect on Mental Functioning in Adults. The effects of adult epilepsy on mental functioning are not clear. One study found that IQ scores increased in adults with recurrent seizures during the trial period. A previous study yielded the opposite result, reporting that intelligence scores start declining with long duration of adult epilepsy. More research is needed in this area, as results have been contradictory.

Overall Physical Effects. In a major 2000 survey, 46% of the respondents with epilepsy described their overall health as "fair" or "poor," compared to 18.5% of those who did not have epilepsy. People with epilepsy also report a higher frequency of pain, depression, anxiety, and sleep problems. In fact, their overall health state is comparable to people with other chronic diseases, including arthritis, heart problems, diabetes, and cancer. Treatments can cause considerable physical effects, such osteoporosis and weight changes.

Emotional Consequence. About 25% to 75% of adults with epilepsy show signs of depression. They also have a higher than average risk for suicide. The most common emotional responses are the following:

Fear of the unexpected seizure.
Acute humiliation after a seizure, particularly if incontinence occurs.
Feelings of alienation at work and in social situations.

Emotional difficulties increase if epilepsy becomes chronic. In one study, the intensity of the negative emotional response was directly related to the intensity and frequency of the attacks.

Effect on Sexual and Reproductive Health

Effects on Sexual Function. There have been studies suggesting that up to two-thirds of patients with epilepsy experience sexual disturbances, including impotence in men. There are various reasons for this:

Epilepsy in childhood may cause disturbances in hormones regulating puberty.
Persistent seizures in adults may be associated with other hormonal and neurologic changes that contribute to sexual dysfunction.
Negative emotions due to epilepsy can reduce sexual drive.
Medications may be responsible for many of these cases, although newer drugs may reduce this problem.

Effects on Female Fertility and Pregnancy. Epilepsy and its treatments can have adverse effects on female fertility and pregnancy.

Epilepsy and Pregnancy

Studies have been conflicting on the effects of fertility from epilepsy, but most suggest that fertility rates among women with epilepsy are lower than among women in the general population. A number factors, including anti-epileptic drugs (AEDs) or social factors, such as marriage at an older age, may contribute to this lower rate. Certain AEDs, particularly valproate, disrupt ovulation and menstruation by increasing male hormone levels and weight and causing polycystic ovaries.

Effects of Epilepsy on the Pregnant Patient and the Fetus

In women who become pregnant, there is a risk for uncontrolled seizures and birth defects from antiseizure medications. In studies of women who were carefully monitored, however, 95% of pregnancies (which is close to normal) had favorable outcomes.

Effects of Seizures. Isolated seizures do not appear to pose any adverse effects to the mother or the unborn child, but repeated seizures and status epilepticus can lead to great dangers. In one study, the effect of epilepsy on complications during pregnancy was the same as in non-epileptic women except for a higher rate of premature deliveries (8.2% in the women with epilepsy).

Effects of Medications on the Fetus. All standard antiseizure drugs pose a significant risk for birth defects, which include malformations of the face and hands or more serious effects on the heart or mental development. The more medications required the higher the risk. (Epilepsy itself, however, does not appear to pose any higher risk for birth defects in the child.) Pregnant women who need to continue medication should be on the lowest possible dose of a single type of drug, if feasible.

Effect of Pregnancy on Seizure Frequency

The frequency and intensity of seizures vary widely in women with epilepsy. About 25% of pregnant women with epilepsy face an increase in events, and the risk is highest in those who have more than one seizure per month prior to becoming pregnant. In most cases, however, there is no change at all. Some pregnant women even have a decrease in seizures. The risk is lower in women who experience less than one seizure in the nine months prior to becoming pregnant. The following conditions may contribute to an increase in seizures during pregnancy:

Nausea and vomiting. (Vitamin B6 and antihistamines may help with nausea.)
Fluid retention.
Higher estrogen levels.
Psychological and emotional stress.
Medication noncompliance from fear of side effects.
Problems with sleeping.
Changes in absorption of anticonvulsants.

Steps for Women Who Want to Become Pregnant

A woman who wishes to become pregnant and has been seizure-free for two or more years may attempt to discontinue drugs under her doctor?s supervision.
If she has not been seizure-free, she should continue medications but try to reduce them to a single drug, if possible. (Again under a doctor?s supervision.)

Steps During Unplanned Pregnancy

If a woman taking antiseizure medications has an unplanned pregnancy, there may be no point in switching medications right away, since the effects of the drugs last for 10 weeks. However, she should notify her doctor immediately.
She should be carefully monitored for both drug levels and any abnormalities in the fetus. Ideally, drug levels should be measured every one or two months or more often if seizures are not controlled. Dosage levels should be adjusted accordingly.
She should also be carefully monitored with ultrasonic evaluation and amniocentesis (visual tests and examination of the fluid in the womb for birth defects and other fetal problems).

Drugs Used During Pregnancy

It is very difficult to determine which drugs are safest for pregnant women because researchers (and patients) do not want to take chances deliberately testing unknown drugs on unborn children. In one 2003 study, the risk for birth defects was significant with valproate, carbamazepine, and oxcarbazepine. Few studies exist on this difficult problem, however, and no AED has an established safety record during pregnancy.

The risk for malformation is higher when more medications are used. For example, there is a 3% risk of birth defects with women who use one anticonvulsant; this risk increases to 20% when four drugs are used. Birth defects are more likely to occur when drugs are administered within the first trimester of pregnancy. Pregnant women should use the most effective anticonvulsant medication for their type of epilepsy at the lowest dose possible to control seizures. They should also have their doctor take blood tests to monitor their anticonvulsant drug levels during their pregnancy.

Birth Defects Associated with Medication. The most common birth defects related to anticonvulsant drugs are:

Cleft lip or palate (risk from phenobarbital, phenytoin, valproate).
Genital or urinary abnormalities (risk from most standard drugs).
Neural tube defects (NTD) in the skull or spinal column (risk of 2% with valproate and 1% with carbamazepine). These complications are most often due to lower folic acid levels caused by both pregnancy itself and antiseizure drugs. Supplements can help prevent this problem. Folic acid is recommended for all pregnant women, in any case, and those with epilepsy should talk with their doctor about taking a supplement of folic acid (5 mg) at least three months before conception, if possible, as well as during the first trimester.
Mental impairment (known risk with phenytoin and valproate; inconclusive in carbamazepine and phenobarbital).
Heart defects (risk from phenobarbital, phenytoin, valproate).
Many of the major antiseizure drugs also cause a deficiency in vitamin K clotting factors that increases the risk for hemorrhage in the newborn. Treatment with vitamin K during the last month and a single dose given to the newborn is recommended.

Labor and Delivery

Seizures occur during labor and after delivery in a small percentage of women with epilepsy. The following labor complications are more common among pregnant women with epilepsy: vaginal bleeding, anemia, and preeclampsia (acutely elevated blood pressure in the third trimester). If seizures occur during labor, they are generally treated intravenously with benzodiazepines or phenytoin. If tonic-clonic seizures, absence seizures, or status epilepticus occur, a cesarean section may be appropriate.

Postnatal Care

Monitoring the Infant. The infant should be thoroughly examined for any malformations. Also, if the mother was given phenobarbital or primidone while pregnant, the infant should be monitored for up to eight months to see if withdrawal symptoms develop. Drug dosages will also need to be adjusted for the mother after delivery.

Breastfeeding. Women on most AEDs can usually nurse their babies, since usually only a small amount of the drug enters the breast milk. The lowest levels are with phenytoin and valproate. (Ethosuximide and possibly levetiracetam are exceptions and should be avoided when a woman is breastfeeding. Women taking phenobarbital are also usually advised not to nurse.) A mother should watch for signs of lethargy or extreme sleepiness in her infant, which could be caused by her medication.