Is It Safe To Get Pregnant When Diagnosed With Epilepsy?
Deciding to start a family can be a stressful time for anyone, but for someone with epilepsy, the decision may be more difficult. There can be concerns about the effects of seizures and anti-seizure medications, as well as passing on epilepsy to a newborn. These concerns may negatively impact a woman’s social and emotional wellbeing1, leading many to decide that pregnancy is not for them2. Women with epilepsy deserve special attention due to potential interactions between hormones and some seizure disorders, however, a recent study has shown that getting pregnant does not significantly impact women with epilepsy.
Researchers from 20 different epilepsy centers across the United States have examined whether getting pregnant increases the frequency of seizures or not. The study, published in the New England Journal of Medicine, shows that seizure activity does not change for women with epilepsy who are pregnant compared to women with epilepsy who are not pregnant3. In a podcast, the main author of the paper encourages women who are considering pregnancy to talk to their doctor about this decision and discuss their concerns.
Below, we have gathered information to address some of the common concerns that women with epilepsy may have when considering pregnancy.
Will having epilepsy make it difficult to get pregnant?
Research has shown no difference in getting pregnant between women with epilepsy and those without.4
Do I need to come off of all my medication to get pregnant?
The decision to come off of medication should always be discussed with your physician, but it is rare for pregnant women to stop all their anti-seizure medication.
Prior to conception, doctors may review your seizure medications to make sure that you are on the right medications and dosages to minimize the risks on developing baby, while maintaining good seizure control. Many of the currently available anti-seizure medications are relatively safe during pregnancy, and continuing your treatment to minimize the risk of seizures most often outweighs the risks. Doctors may use tests like ambulatory EEG monitoring to determine how well your seizures are controlled and whether you’re on the best treatment plan.. During pregnancy, anti-seizure medications are closely monitored, and for many women, their doses may actually increase.3 This is because pregnancy can affect how medications are absorbed by your body, and the dose you were taking pre-pregnancy may result in a lower level of the medication in your body. Doctors, therefore, monitor the concentration of the medication through blood draws and may adjust doses to maintain stable medication levels throughout pregnancy.
Can I give my baby epilepsy?
It is unlikely. Fears, and misunderstandings, about genetic risks of epilepsy can make a woman not want to have kids.2 However, most epilepsies are not genetic in nature, and for those with genetic predisposition, it is not guaranteed that a child will develop epilepsy. Genetic counseling can help potential parents make informed decisions about the relative risk associated with specific types of epilepsies.
Does this mean there are no risks to pregnancy?
Not quite – its best to communicate with your doctor at each stage of pregnancy.
Pregnancy itself does not seem to significantly impact seizure frequency, and those that were seizure free prior to pregnancy are most likely to remain that way during pregnancy.3 However, seizures may still happen.5 Your doctors will work together to minimize the risks of seizures. Certain types of seizures may increase risks to both mother and baby during pregnancy, and it is important to discuss Sudden Unexplained Death in Epilepsy (SUDEP).4 The goal during a pregnancy is to make sure that seizures are as well controlled as possible. This will also minimize the risk for seizures during labor and delivery.
What about breastfeeding?
Another common question is what to do after delivery, with recent research indicating that women with epilepsy are less likely to choose to breastfeed.6 The concern is that a baby may be exposed to the nursing parent’s anti-seizure medication through breastmilk and it may negatively affect the infant’s health. However, the research does not support this fear and that the actual level of any anti-seizure medication within the breastmilk is minimal7; experts agree that is safe for those on anti-seizure medication to breastfeed.8,9
What can I do?
Talk to your doctor to make sure you and your partner are well-informed of the risks of pregnancy both with and without epilepsy.
Specific information is sometimes hard to come-by, and many potential parents may feel guilty using certain medications and not knowing exactly what may happen. A simple suggestion that most doctors will agree with is to make sure you are getting the necessary nutrients, even before you become pregnant. Low levels of folate can result in abnormal brain development, but folate and prenatal vitamin supplementation prior to conception and during pregnancy can decrease this likelihood.4
There is also a documented relationship between epilepsy and psychological disorders, such as anxiety and depression.10 This is made worse by stigma associated with epilepsy that can impact self-confidence, as well as one’s work, education, and general health.10 Therefore, it is important to talk to your doctor and make sure that your concerns are answered.
About the Authors
Hans Klein, Ph.D., is the Manager of Scientific Publications for Stratus. Dr. Klein is a social neuroscientist by training and received his doctorate at the University of Texas at Dallas, where his research focused on the neural underpinnings of social cognitive deficits within schizophrenia spectrum disorders, as well as methods for improving measurement and research design.
Trudy Pang, M.D., is an Assistant Professor of Neurology at Harvard Medical School and Director of the Clinical Neurophysiology and Adult Epilepsy Fellowship at Beth Israel Deaconess Medical Center. She is also Director of the comprehensive Women’s Health in Epilepsy Program, a collaborative effort across Boston medical institutions to address the special needs of women with epilepsy. Dr. Pang earned her medical degree at Michael G. DeGroote School of Medicine and specializes in the investigation and treatment of epilepsy and status epilepticus. Her clinical research includes work on T-wave alternans in patients with established or new onset epilepsy and the effects of anti-epileptic drugs and seizures on markers of sudden death in patients with epilepsy. She has published more than 20 peer-reviewed clinical papers related to epilepsy in renowned publications such as Experimental Neurology, Clinical Neurophysiology, and Seizure: European Journal of Epilepsy.
- Santos AMC, Castro-Lima H, Matos MAA, Brito MB. Quality of life among women with epilepsy during their reproductive years. Epilepsy Behav. 2018;85:10-3. doi:10.1016/j.yebeh.2018.04.028
- Nakamura J, Sorge ST, Winawer MR, Phelan JC, Chung WK, Ottman R. Reproductive decision-making in families containing multiple individuals with epilepsy. Epilepsia. 2021;62(5):1220-30. doi:10.1111/epi.16889
- Pennell PB, Meador KJ. Changes in Seizure Frequency and Antiepileptic Therapy during Pregnancy. Reply. N Engl J Med. 2021;384(10):977-8. doi:10.1056/NEJMc2101226
- Stephen LJ, Harden C, Tomson T, Brodie MJ. Management of epilepsy in women. Lancet Neurol. 2019;18(5):481-91. doi:10.1016/S1474-4422(18)30495-2
- Kusznir Vitturi B, Barreto Cabral F, Mella Cukiert C. Outcomes of pregnant women with refractory epilepsy. Seizure – European Journal of Epilepsy. 2019;69:251-7. doi:10.1016/j.seizure.2019.05.009
- Al-Faraj AO, Pandey S, Herlihy MM, Pang TD. Factors affecting breastfeeding in women with epilepsy. Epilepsia. 2021. doi:10.1111/epi.17003
- Birnbaum AK, Meador KJ, Karanam A, Brown C, May RC, Gerard EE, et al. Antiepileptic Drug Exposure in Infants of Breastfeeding Mothers With Epilepsy. JAMA Neurol. 2020;77(4):441-50. doi:10.1001/jamaneurol.2019.4443
- Noe K. Further Evidence Breastfeeding by Women With Epilepsy Is Safe: Are Mothers Getting the Message? Epilepsy Curr. 2020;20(3):141-3. doi:10.1177/1535759720917997
- Veiby G, Bjork M, Engelsen BA, Gilhus NE. Epilepsy and recommendations for breastfeeding. Seizure. 2015;28:57-65. doi:10.1016/j.seizure.2015.02.013
- Huber-Mollema Y, Oort FJ, Lindhout D, Rodenburg R. Well-being of mothers with epilepsy with school-aged children. Epilepsy Behav. 2020;105:106966. doi:10.1016/j.yebeh.2020.106966