Epilepsy and Pregnancy

Epilepsy, a brain disorder that causes repeat seizures, affects people of all ages and is the fourth most common neurological disorder in the world. However, women and people assigned female at birth (AFAB) with epilepsy are especially vulnerable at times of shifts in their sex hormone concentrations, such as puberty, pregnancy, and the transition to menopause.

If you’re living with epilepsy and want to become pregnant, you probably have a lot of questions. Lidia Maria Moura, MD, MPH, PhD and Paula E. Voinescu, MD, PhD, both Mass General Brigham neurologists, answer common questions and share tips about how to have a successful pregnancy if you have epilepsy.

Is it safe to get pregnant if I have epilepsy?

While epilepsy can create complications during pregnancy, you can still have a successful pregnancy and deliver a healthy baby with the help of your health care team.

“The good news is that complications can be avoided if the pregnancy is planned,” says Dr. Voinescu. Planning your pregnancy with your care team up to a year before you try getting pregnant allows you to address any issues with your epilepsy ahead of time.

Your care team may include:

• A neurologist, for care specific to your epilepsy

• An obstetrician-gynecologist (OB/GYN), for general pregnancy and birth care

• A maternal-fetal medicine (MFM) specialist, for care of complex health conditions during pregnancy

• A psychiatrist, who can help manage changes to your mood and mental health if needed, common during this vulnerable time

Will my baby be born with epilepsy?

If you have epilepsy, it’s unlikely that you will pass it on to your child. Research shows that the chance of a child developing epilepsy is only slightly higher if their parents have epilepsy, compared to those whose parents don’t.

However, certain people may have a higher chance of passing epilepsy on to their children. You should talk to your care team if you have:

• A known genetic cause of your epilepsy

• A family history of epilepsy

• Autism or an intellectual disability in addition to your epilepsy

• A brain abnormality called PVNH (periventricular nodular heterotopia), which some people with epilepsy may have.

• Sleep-related hypermotor epilepsy

If you fall under any of those categories, your care team may recommend genetic counseling or testing to learn about your risk of passing epilepsy on to your child.

What if I have a seizure while pregnant?

Epilepsy can affect your memory and cause seizures, which can create complications in your pregnancy. Your care team helps get your seizures under control before you become pregnant.

Dr. Moura explains that “a seizure is a short change in normal brain activity, which can cause a person to fall, shake, or lose awareness.” While the signs and symptoms of a seizure vary, they may include:

• Delays in responsiveness

• Temporary paralysis

• General confusion, anxiety, or emotional distress

• Unconsciousness

• Spasms throughout part or all of the body

Having a seizure during your pregnancy can cause injury and increase your chances of complications. If you have a seizure while pregnant, it’s important to:

• Follow the same seizure guidance from your provider as you did before you were pregnant.

• Tell your care team, both your neurologist and OB/GYN, as soon as you can.

• Make sure your partner, support person, family, and employer know what to do when you have a seizure, including calling 9-1-1 if your symptoms are severe.

Epilepsy treatment options during pregnancy

Most adults living with epilepsy take medicine for their seizures. However, about 1 in 3 people with epilepsy experiences “drug-resistant epilepsy,” where they can’t achieve complete seizure control. This means you may still experience seizures while pregnant, despite being on anti-seizure medication (ASM).

Dr. Moura notes that other epilepsy treatment options are available if medication doesn’t work, such as deep brain stimulation. This is an FDA-approved treatment where a doctor implants a device in your brain to detect seizures and send pulses that normalize your brainwaves.

Will I need to change my anti-seizure medication?

Your care team helps you find the best dose and type of ASM before you try getting pregnant.

Some ASMs taken during pregnancy have been linked to a higher risk of birth defects and cognitive or behavioral issues in children. When planning your pregnancy, your team evaluates the types of medication you take for your epilepsy and may switch you to ones that are less likely to affect your baby’s development.

During pregnancy, you want to maintain the same or a higher level of ASM as you did before getting pregnant. Each month during your pregnancy, your provider draws your blood to check your ASM levels, as you may need to increase your dosage as your pregnancy progresses.

Drs. Moura and Voinescu stress that while there’s no sure way to prevent seizures if you have epilepsy, taking your ASM as prescribed will help get your seizures under control.

“If you have been diagnosed with epilepsy, I cannot stress this enough: take your medication,” says Dr. Voinescu. “Taking your medications as prescribed will lower the risk for seizures even if you're pregnant.” For most ASMs, the risks of exposure for the baby while you’re pregnant are significantly lower than the risks of uncontrolled seizures.

Will my seizure medication affect my baby’s development?

“Children who are born to women with epilepsy may be at greater risk of birth defects when some anti-seizure medications are used,” says Dr. Voinescu.

Some ASMs can also affect the development of a baby’s brain (called neurodevelopment) and increase the possibility of cognitive or behavioral issues. For example, research shows that children exposed to valproic acid during pregnancy were more likely to have birth defects as well as lower cognitive and verbal abilities, compared to children who were not exposed.

Other ASMs have a lower risk of birth defects and lower risk of affecting your baby’s neurodevelopment and behavior. Your care team may recommend you switch medications or start taking folic acid supplements, which have been shown to reduce the risk of severe language delay and autism in young children when taken during pregnancy.

 “That risk is reduced by selecting the right medication and dose, and by supplementing with folic acid,” adds Dr. Voinescu.

Can I take my ASM while chestfeeding?

Chestfeeding has been shown to be safe and beneficial for most patients using anti-seizure medication and for their babies. The benefits of chestfeeding outweigh the risks. Drs. Moura and Voinescu also note that a baby’s exposure to ASMs through chest milk is significantly lower than while in the womb.

How can I reduce my seizure risk while pregnant?

Your care team works together with you to help get your seizures under control before you become pregnant. You likely won’t experience a change in the number of seizures you have during pregnancy, so controlling your seizures as much as possible beforehand will reduce the amount you’ll have while pregnant.

There are steps you can take to reduce your risk of seizure during pregnancy. Here’s what you can do:

• Take your medication as prescribed. Sudden changes in your ASM dose can increase your risk of seizure, so it’s important to take your medication throughout your entire pregnancy. Consider setting up a reminder on your phone so you don’t miss a dose.

• Keep track of your seizures. Monitor your symptoms even if you don’t have a full, convulsive seizure, starting before you get pregnant so you can establish a baseline. Be sure to share this with your care team so they can make changes to your care if needed.

• Monitor your seizure triggers. Learn what patterns and situations make it more likely for you to have a seizure, so you can take steps to avoid them. For example, lack of sleep is a common trigger for people with epilepsy, so follow these tips on how to sleep better and wake up rested.

• Have monthly ASM check-ins. Meet with your care team each month to monitor your ASM levels. They may need to adjust your dosage throughout your pregnancy to maintain the levels you had before becoming pregnant.

“If you have epilepsy and are planning a pregnancy, it is very important to consult your OB/GYN and neurologist early for the best prenatal care,” concludes Dr. Voinescu. Planning your pregnancy ahead of time and communicating with your epilepsy care team improves your chances of a safe, successful pregnancy.