Planning for pregnancy when you have epilepsy

At one time, women with epilepsy were advised never to get pregnant. That’s not the case anymore.

For most patients, having epilepsy should not prevent you from having children. However, there are challenges to consider – and plan for – with your doctor.

The potential effect of seizures and medications to control them create unique concerns during pregnancy. Approximately 24,000 babies are born to women with epilepsy every year – the overwhelming majority of which are healthy.

Research published in August 2022 found that women with epilepsy may be at increased risk of depression and anxiety symptoms during or after pregnancy compared with peers. Today, there are pregnancy-safe treatment options for both conditions.

While some planning is important, it is possible to have a healthy pregnancy while managing the challenges associated with epilepsy.

How should I plan for pregnancy if I have epilepsy?

Before you begin trying to have a baby, request an appointment with your epileptologist and Ob/Gyn – or a maternal-fetal medicine specialist. These doctors specialize in high-risk pregnancies and can provide advanced care should any complications develop.

You and your doctors will evaluate how well-controlled your seizures are and determine whether any treatment changes are needed before you become pregnant.

We urge women to take a folic acid supplement before conception to reduce the risk of neural tube defects, which affect the brain, spine, and spinal cord. Women with epilepsy may need to take more folic acid than other women – up to 4 mg a day for two to three months before conception. This is because anti-epileptic drugs (AEDs) may decrease the amount of folic acid levels in the body. During your 20-week ultrasound, we’ll look for malformations that AEDs can cause. This exam is effective for looking for neural tube defects.

As with any other woman trying to become pregnant, make healthy lifestyle choices:

• Avoid smoking, drugs, and alcohol
• Eat a healthy diet
• Exercise
• Get plenty of rest
• Take prenatal vitamins

Pregnant patients with epilepsy may be more likely to show symptoms of depression and anxiety than peers with or without epilepsy. Symptoms also can occur during the postpartum period.

While researchers did not find more episodes of major depression among pregnant patients with epilepsy, they did identify risk factors that include:

• History of mood disorders
• Unplanned pregnancy
• More than one seizure in the past three months
• Taking more than one epilepsy medication

Talk with your doctor if you have any of these risk factors, and mention symptoms of depression and anxiety such as excessive crying, difficulty bonding with your baby, reduced interest in favorite activities, or thoughts of harming yourself or the baby.

Your doctor can help you find a safe medication and dosage, as well as other treatment options such as therapy, to manage symptoms during and after pregnancy.

Can I keep taking my epilepsy medication during pregnancy?

Any medication you take during pregnancy can affect your baby. Women with epilepsy have a 4-6% risk of giving birth to a baby with a birth defect, compared to the general population’s 2-3% risk.

But this doesn’t mean you should stop taking your epilepsy medication the moment you find out you’re pregnant or decide you want to become pregnant. Your doctor will discuss the risks of your particular medication and dosage, and together you will decide if you need to make changes.

Read more: Should I stop taking medication when I’m pregnant?

Some anti-epileptic drugs, such as valproate and phenobarbital, carry a higher risk of neural tube defects (lack of spinal cord closure) as well as cognitive deficits in the child. For those women, we’d likely recommend switching to a different AED. If your seizures are controlled only on that medication, we can consider lowering the dosage to reduce the risk. Taking multiple medications also can increase the risk to a baby, so we may look at making changes in that instance as well.

It can take a little time – from as little as two weeks to several months – to find an effective drug and adequate dosing. There’s no set criteria for waiting to become pregnant after switching your medication. I advise waiting about three months after stopping a medication to be sure it’s cleared your system. I often find patients are willing to wait a bit before becoming pregnant in order to find a drug that controls their seizures, is well-tolerated, and carries less risk to their future baby.

I wouldn’t normally recommend stopping medication altogether, but this may be possible for some women who have been seizure-free for two years with good evidence they’ll remain that way.

You’ll likely see your neurologist every month or every other month during pregnancy to test AED levels in your blood. This is because these AED levels (e.g levetiracetam and lamotrigine) can drop during pregnancy. There are two theoretical reasons for this:

• Kidney function and in some cases liver function increases during pregnancy, so you’re excreting more medication as it’s filtered through the kidneys.
• Changes in blood volume causes the medication to become diluted.

We may need to increase the dosage to keep a consistent pre-pregnancy AED level to control seizures. We’ll also monitor these levels after you give birth because they should return to pre-pregnancy levels, in which case we may need to then decrease the dose.

How does pregnancy affect my epilepsy?

Women’s bodies experience an ebb and flow of the hormones estrogen and progesterone. During ovulation, there’s an increase in the production of estrogen, which is pro-convulsive, meaning it has a higher risk of causing seizures. During pregnancy, we see an increase in progesterone, which has anti-convulsive properties. So for the majority of women, seizure frequency declines or remains the same during pregnancy.

Seizures during pregnancy can be dangerous – to mother and baby. The risk depends on the type of seizure:

• Focal seizure with no impairment of awareness (previously called simple partial seizure): People usually are alert and aware during this type of seizure. Unless the seizure spreads to become a generalized seizure, there is little risk to mom or baby.
• Focal seizure with impairment of awareness (previously called complex partial seizure): This type of seizure can cause altered awareness and lead to injury. For example, if you’re cooking when a complex partial seizure starts, you could burn yourself. While this type of seizure may not directly affect the baby, an injury to mom can affect the baby.
• Generalized tonic-clonic seizure: Also known as a grand mal seizure in laymen’s terms, this is what most people think of when they hear the word “seizure.” The person loses consciousness and his/her muscles stiffen and then make jerking movements and can bite the tongue or lose urine/bowel control. Along with the risk of injury from falling, these seizures can cause oxygen deprivation to the baby and/or lowered fetal heart rate.

See your doctor to monitor your baby’s health if you have a generalized seizure, and call your doctor if there’s an increase in seizure frequency – no matter the type. It may be that we need to adjust your medication dosage.

Will my baby have epilepsy?

While there can be a genetic component to epilepsy, the risk of passing it on to your baby is usually low. According to the Epilepsy Foundation, fewer than two people out of 100 develop epilepsy. If you have epilepsy and the father does not, the risk to your baby is less than five in 100.

If you’re concerned, genetic testing and counseling may help determine whether your epilepsy is genetic and whether there are potential risks to your children.

Can I breastfeed if I’m on an AED?

The benefits of breastfeeding are widely known, and women are encouraged to feed their babies this way. The same goes for women with epilepsy.

While a small amount of AEDs can be found in breastmilk, it’s less than the amount babies were exposed to during pregnancy. A 2015 review found most AEDs are considered safe during breastfeeding. I think the benefits outweigh the very small risk for harm, and I fully support my patients’ decision to breastfeed if they choose.

Women with epilepsy give birth to happy, healthy babies every day. With a little extra preparation and collaboration with your neurologist and Ob/Gyn, you can improve your chance for a healthy pregnancy and baby.

Important information if you don’t want to get pregnant

If you don’t plan to become pregnant in the near future, have a conversation with your doctor about birth control. The overall unintended pregnancy rate in the United States is 45 percent. But a January 2017 study of women with epilepsy who had children found that 65 percent of the pregnancies were unintended.

One potential reason for this is that some AEDs (especially enzyme-inducing agents) reduce the effectiveness of certain hormonal birth control methods. The 2017 study found that intrauterine devices (IUDs) had the lowest failure rate for women with epilepsy, likely because IUDs administer hormones directly to the reproductive system. This is in contrast to methods such as the pill, implant, or patch, in which the contraceptive hormones are metabolized in the liver along with the enzyme-inducing AED, thereby reducing the effectiveness of the birth control.

Work with your neurologist and Ob/Gyn to find the birth control method that works best for you.