Family Planning With Epilepsy
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Medically reviewed by Huma Sheikh, MD
Epilepsy impacts 1.3 million people who can become pregnant across the United States. Couples with epilepsy often have concerns about passing the condition to their children, fertility, and pregnancy safety.
Though epilepsy can present challenges, positive pregnancy outcomes are possible. This is especially true with planning and guidance from your healthcare team.
This article reviews how antiepileptic drugs (AEDs) may affect fertility, risk factors affecting a couple’s ability to get pregnant, pregnancy safety, and family planning with your healthcare provider.
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Medication for Epilepsy and Fertility
When it comes to family planning, managing epilepsy and keeping seizures under control is key. But antiepileptic drugs (AEDs) can have unwelcome side effects regarding fertility (the ability to get pregnant) for both sexes.
Not all antiepileptic drugs carry the same potential side effects. Some AEDs affect sex hormones, while others affect the areas of the brain responsible for sexual desire and function.
Older-generation AEDs are more likely to cause fertility problems and sexual dysfunction than newer-generation AEDs.
Though this is not an exhaustive list, examples of older-generation AEDs include:
Dilantin (phenytoin)
Tegretol, Curatil (carbamazepine)
Belvo, Depakote, Dyzantil, Convulex, Syonell (valproic acid)
Solfoton (phenobarbital)
Newer-generation AEDs include:
Lamictal (lamotrigine)
Trileptal (oxcarbazepine)
AED fertility effects are often dose-dependent. For example, gabapentin-induced sexual dysfunction occurs more often with daily doses larger than 900 milligrams (mg).
People Assigned Female at Birth
Seizures can harm fertility in people with vaginas. For example, hormone fluctuations trigger certain seizures, especially for those with catamenial epilepsy. This often occurs during ovulation (egg production), when you are most likely to conceive.
Some hormonal medications that treat catamenial epilepsy will alter or stop the menstrual cycle. Antiepileptic drugs (AEDs) can make it harder to become pregnant by causing:
Disruption of hormone levels
Menstrual cycle irregularities
Decreased libido (sex drive)
Weight gain (which can lead to metabolic problems)
In addition, higher AED doses tend to increase the risk of ovulation problems.
People Assigned Male at Birth
For people who have penises, epilepsy may cause infertility related to sperm quality, count, and mobility. Certain AEDs can also contribute by causing:
Decreased sex hormones (especially enzyme-inducing AEDS)
Problems with sperm count and quality
Sexual or erectile dysfunction
Not all AEDs cause the same types and levels of fertility problems in those assigned male at birth. For example:
Trileptal (oxcarbazepine), Keppra (levetiracetam), and Lamictal (lamotrigine) don’t significantly affect sexual function or hormones.
Trileptal (oxcarbazepine) may improve sperm quality but occasionally causes orgasm and ejaculation problems.
Lamictal (lamotrigine) is less likely to cause erectile dysfunction than Depakote (valproic acid) and Tegretol (carbamazepine).
Other Factors Affecting the Ability to Get Pregnant
People living with epilepsy have lower pregnancy rates than those living without it. However, fertility rates (ability to get pregnant) are similar. Experts agree that multiple factors contribute to these statistics, not just the disease alone.
Hormones
The endocrine system is a web of organs and glands working with hormones to assist the body in many functions, including reproduction.
Epilepsy and AEDs can interfere with this balancing act by disrupting the hypothalamic-pituitary axis and gonadotropin-releasing hormones (GnRH). This causes problems with reproductive hormone development and regulation.
Disruptions in female sex hormones, such as estrogen and progesterone, can lead to menstrual cycle disruption and a decrease in sexual interest or enjoyment.
An imbalance of male sex hormones, such as testosterone, can cause decreased sex drive and sexual dysfunction (problems with erection, orgasm, or ejaculation).
Related:Gonadotropin Releasing Hormones Agonists Overview
Menstrual Cycles
Epilepsy and AEDs can cause an imbalance of the following hormones:
Estrogen
Progesterone
Gonadotropin-releasing hormone (GnRH)
These imbalances can cause fertility problems by slowing or stopping ovulation and menstrual cycles (periods).
A lack of gonadotropin-releasing hormone (GnRH) causes hypothalamic amenorrhea (no menstruation). This means the hypothalamus (an endocrine gland in the brain) stops producing GnRH, which triggers a menstrual cycle.
Catamenial epilepsy affects about 40% of people with vaginas who live with epilepsy. Their seizures frequently worsen with hormone fluctuations. Treatment often involves hormones that stop menstrual cycles, impacting fertility.
Polycystic Ovary Syndrome (PCOS)
Polycystic ovary syndrome (PCOS) is a condition that affects people diagnosed with epilepsy, especially those who take valproic acid. Symptoms include excessive hair growth, weight gain, and difficulty sleeping.
PCOS stems from an imbalance of hormones and can impact fertility by causing irregular periods and stopping ovulation. It also increases the risk of miscarriage.
Related:How Follicle Stimulating Hormone (FSH) Helps Fertility Treatments
Mental Health
Various mental health disorders, including depression, anxiety, and obsessive-compulsive disorder (OCD), are more common in individuals with epilepsy.
Mental health disorders and treatment can cause fertility issues or sexual problems due to the following:
Decreased self-esteem
Social isolation
Sexual dysfunction
Decreased sexual desire
Inadequate vaginal lubrication
Problems with interpersonal interactions
For some, a fear that sexual activity can induce seizures can negatively impact fertility.
Risks During Pregnancy Related to Epilepsy
Over 90% of pregnancies involving people with epilepsy proceed without any significant issues. However, seizure control and epilepsy care can change during pregnancy, making it a high-risk pregnancy.
Medication
The body's physiological and hormonal changes during pregnancy can affect how AEDs work. Your healthcare provider might adjust your dosage or monitor AED blood levels throughout pregnancy. They may also change your AED to minimize the risk to the developing fetus.
For males planning a family using their own sperm, consider speaking to your healthcare provider before trying to conceive. They can check the latest research to ensure the AED you take will not cause potential harm to the baby you conceive.
Seizures
Tight seizure control is essential during pregnancy because prolonged seizure activity can decrease the oxygen supply to the fetus. It’s important to avoid triggers, get plenty of rest, and take AEDs as prescribed.
If your seizure activity changes with pregnancy, notify your healthcare provider immediately. They can monitor you and your medication to help minimize seizure risk.
Your type of epilepsy and treatment can affect your body's reaction to pregnancy. For some, hormone changes and stress might increase or decrease seizure activity. However, many people have the same amount of seizures.
Those with catamenial epilepsy may have more seizures if they have to stop hormone treatments while trying to conceive. The hormone fluctuations that occur during or after pregnancy can also be a trigger.
Miscarriage
Miscarriage (pregnancy loss) rates for people with epilepsy double when the pregnancy is unplanned. This is compared to those with epilepsy who plan their pregnancies as well as rates for the general population.
When planning a family, it’s important to note that some AEDs reduce how well hormonal birth control works. This is especially true with enzyme-inducing AEDs.
Related:How to Prevent Pregnancy With the Right Contraceptive Choices
Birth Defects
In the general population, the rate of having babies with congenital birth defects is 2.3%. This increases to 7% for pregnant people living with epilepsy. Though the exact cause is unknown, it’s most likely due to poor seizure control (depriving the fetus of oxygen) and taking certain AEDs during pregnancy.
AEDs can increase the risks of congenital (present at birth) disabilities such as:
Spina bifida (cleft spine)
Developmental problems
Cognitive impairment (lower IQ)
The risk appears greater with older-generation AEDs, higher doses, and polypharmacy (taking multiple AEDs together). Healthcare providers typically avoid Depakote (valproic acid) during pregnancy. They may also avoid Topamax (topiramate), especially during the first trimester and in higher doses.
Though newer-generation medications carry a lower risk of birth defects, they are not risk-free, especially in higher doses.
Your provider will likely recommend taking folic acid supplements during pregnancy. It reduces the risk that your baby will be born with neural tube defects such as spina bifida. Studies also link folic acid with a lower risk of the baby developing epilepsy.
Preparing for Pregnancy
You can begin pregnancy planning by making healthy lifestyle choices. This includes:
Getting enough sleep
Maintaining a healthy weight
Eating a healthy diet
Avoiding cigarettes, alcohol, caffeine, and illegal drugs
Though it’s not always possible, discussing your pregnancy plans with your healthcare provider before getting pregnant is important. It’s safer for you and the developing fetus. It is also essential to:
Notify your healthcare provider(s) if you have changes in seizure activity
Go to all prenatal appointments (when pregnant)
Take prenatal vitamins and folic acid (if prescribed)
Talk to Your Healthcare Provider About Family Planning
If you're considering starting a family, have an open conversation with your healthcare team. It's best to reach out sooner rather than later. You can discuss the best way to prevent breakthrough seizures, possible congenital disabilities, and potential fertility problems.
Your team may suggest expert consultations, changes in medication or lifestyle, frequent monitoring, and genetic testing (to evaluate the risk of your baby having epilepsy).
Summary
Prospective parents with epilepsy often have concerns about fertility and safety during pregnancy. Positive pregnancy outcomes are possible with proper planning and guidance from your healthcare team.
When it comes to family planning, managing epilepsy and keeping seizures under control is critical. Ask your healthcare provider if your antiepileptic drugs (AEDs) can cause issues with your hormones, fertility, menstruation (period), and sexual function, and if their use can lead to birth defects.
Frequently Asked Questions
Is epilepsy genetic?
Studies show that more than half of epilepsies have a genetic component, like mutations linked to epilepsy with febrile seizures plus (GEFS+) and Dravet syndrome. Children of pregnant people with epilepsy are at greater risk than those in the general population or the children of non-birthing genetic parents with epilepsy.
Do people with epilepsy have high-risk pregnancies?
Over 90% of pregnant people with epilepsy experience no complications. Pregnancy for those with epilepsy is high-risk because seizure control can change, miscarriage risk is higher with an unplanned pregnancy, and your healthcare provider may need to adjust treatment during pregnancy.
Why should epileptic women take folic acid before and during pregnancy?
Healthcare providers recommend folic acid to most pregnant people. It plays a crucial role in developing the nervous system (spinal cord and brain). Folic acid reduces the risk of babies being born with neural tube defects such as spina bifida. Studies also link folic acid with a lower risk that the baby will develop epilepsy.
