Basic Information on Epilepsy in Women
Epilepsy is more common in men than women, but not significantly so:
- 1 in 21 men has a risk of developing epilepsy in their lifetime, versus 1 in 28 women.
Why the gender gap?
- Perhaps there is higher trauma-related epilepsy in men.
- There may be more focal epilepsy in men than women in age categories >20 years.
- Hormone levels are subject to change throughout a woman's life.
- This may affect when her epilepsy starts, how often her seizures happen, and if and when she stops having seizures.
General Female Hormones and Epilepsy
Many nerve cells in the brain are affected by estrogen and progesterone, which are the main female sex hormones.
An increase of estrogen can worsen seizures. This is the reason why some women report an increased seizure frequency during or around menstruation. This is called catamenial epilepsy.
Seizures can lead to an increase in the serum prolactin levels and an increase in the luteinizing hormone (LH) and follicle stimulating hormones (FSH):
- The LH hormone can interfere with menstruation and ovulation, causing possible infertility.
- The FSH hormone can trigger more estrogen production.
If you think you have catamenial epilepsy, you should document on a calendar for 2-3 months when you have your seizures and when your period starts and stops.
- You should bring this to your doctor for review to see if you meet the criteria.
Why is this important?
- Catamenial epilepsy can be treated with other medications such as progesterone-only hormones or medications such as acetazolamide or clobazam.
Talk to your doctor for more information.
Fertility and Epilepsy
In women with epilepsy, the risk of infertility is increased when using 3 or more anti-seizure medications.
Women with epilepsy are more likely to have irregular periods, which can suggest less ovulation and decreased fertility.
If you are experiencing trouble conceiving or have had multiple miscarriages, speak to your doctor about seeing a materno-fetal specialist.
Pregnancy and Epilepsy
Women with epilepsy who wish to become pregnant or are pregnant face unique challenges:
- More than 1.1 million women with epilepsy (WWE) in the US are of childbearing age.
- 24,000 babies are born to WWE each year.
- Seizure freedom for at least 9 months prior to pregnancy is probably associated with a high likelihood (84–92%) of remaining seizure-free during pregnancy (American Academy of Neurology Guideline, 2009).
- Having seizures in the month prior to conception has a 15 times increased risk of having seizures during pregnancy. Women with focal seizures are at higher risk of having seizures during pregnancy than women with generalized seizures.
Pregnancy and Birth Defects
Congenital malformations or birth defects affects 1% of fetuses:
- Depending on the anti-epileptic medication, these birth defects can range from 1% to over 10%.
- Valproic acid has associated defects, especially spina bifida, around 9-10%.
- Topiramate has increased risk of cleft lip and/or palate, around 4-5%.
- Taking high-doses or multiple anti-epileptic medications can also increase these risks.
- Taking folic acid 1 to 4 mg per day can reduce the risk of spina bifida BEFORE getting pregnant.
The most common type of major birth defects include:
- Congenital heart defects
- Cleft lip and/or palate
- Spina bifida
- Skeletal abnormalities
- Dermal Hemangioma
What Do You Do if You Get Pregnant?
If you get pregnant while taking medication for seizures:
- DO notify your physician immediately.
- DO take prenatal vitamins and folic acid supplementation.
- DO NOT stop taking your seizure medications.
- Having seizures from medication withdrawal can pose a risk to you and your developing child.
- Many women learn they are pregnant midway through the first trimester, long after spinal development is completed. Stopping or switching medications may pose more risk than continuing.
- DO breastfeed, as the AAN and American Epilepsy Foundation confirm that the benefits outweigh the risks.
Remember, 99/100 women with epilepsy give birth to normal children. Don’t panic! Call your doctor and inform them of your pregnancy.