Epilepsy in Women - Gender Makes a Difference!
We know that different people experience epilepsy differently. This is especially true between different genders. On April 29th, 2014 we hosted a lecture about issues that women with epilepsy face. Dr. Tiffany Townsend (a neurologist who specializes in epilepsy) spoke about some of the ones that affect women with epilepsy. This article will summarize the information she discussed and includes slides from her presentation.
Many people tend to think that epilepsy issues regarding women with epilepsy are primarily related to pregnancy complications or seizures during menstruation. However, there are many more issues to consider. Women with epilepsy have a higher incidence of polycystic ovary syndrome (PCOS), early menopause, decreased bone density, delayed puberty, and menstrual disorders.
Seizures can become more or less frequent for anyone around adolescence. In particular these changes could occur during puberty – when menstruation starts. Therefore medications or the doses of them may need to be changed.
For women with epilepsy, aspects of their ovulary cycle may be different from women without epilepsy. For instance some women may have more seizures or only seizures during certain times in the menstrual cycle.
Menstrual disorders are also more common in women with epilepsy. These are even more common in women who have frequent seizures, are on multiple medications, or on certain medications such as valproic acid (Depakene), divalproex sodium (Epival) or carbamazepine (Tegretol). The most common menstrual disorders in women with epilepsy are anovulatory cycles and polycystic ovary syndrome (PCOS). These can have negative impacts on fertility, health, and physical appearance.
Anovulatory cycles are when a an egg is not released – though symptoms of menstruation (the bleeding) may still happen. Anovulatory cycles can cause infertility and can increase seizure frequency.
Polycsytic Ovary Syndrome (PCOS) is when small cysts develop on the ovaries. The cysts are not painful but lead to hormone imbalances. Unfortunately this can have many negative effects – including changes in physical appearance. Women may experience increased facial hair or hair loss, acne, or weight gain. They may also experience mid-cycle bleeding. This also may cause chronic anovulatory cycles – that can then lead to infertility. The prevalence of PCOS in women with epilepsy is 10% to 26% vs. 4% to 11% of the general population.
Women who are taking valproic acid, are more likely to develop PCOS. If a woman is able to go off this medication or take another one, PCOS may stop or the symptoms will reduce.
It is important for all women with epilepsy to know that some medications can reduce the effectiveness of various contraceptive methods. This can be a big problem as it can lead to an unexpected pregnancy. For a list of medications and the contraceptive methods that can be affected, please read our information sheet Epilepsy and Contraception.
Folic acid, or folate, is one of the B vitamins important for healthy growth of an unborn baby. It is essential to the normal development of a baby's spine, brain and skull, especially during the first four weeks of your pregnancy. This is primarily taken to reduce the risk of a baby having spina bifida. The risk of having a child with spina bifida is higher for women taking certain kinds of epilepsy medications. It is recommended that all women of child bearing age have at least 0.4 mg of folic acid a day (whether it be from food sources or vitamins). For women taking valproic acid, divalproex sodium, or carbamazepine, a higher dose of folic acid may be recommended. This could range from 1% to 5% As well it is very important to already be taking folic acid before trying to get pregnant. Folic acid prevents spina bifida in the first four weeks of pregnancy – this is usually before you know that you are pregnant.
The majority of women with epilepsy have healthy and happy babies. However women with epilepsy must take special precautions before getting pregnant, as well as during pregnancy.
It is exceptionally important to speak to your doctor about your medications at least six months in advance. This will allow time to change medications if necessary.
A worry for women who are or are thinking about getting pregnant is having a seizure while they are pregnant. Unfortunately about 15% to 33% of women will have increased seizures during pregnancy. However approximately 30% will have fewer or no seizures and 30% may have the same amount of seizures.
Luckily more and more long-term studies have been done to determine what medications will have the least risk of congenital malformations (major or minor birth defects) or problems in development. Though this is often a major worry for women, it is important to note that the risk of this happening is low for most commonly used medications for seizures. The main medication that is not recommended for use during pregnancy is valproic acid. This medication has a very high risk of causing problems in a baby’s development as compared to other medications. Because of this it is recommended that women of child bearing age not be prescribed valproate acid unless absolutely necessary.
A new study has shown that breastfeeding does not have negative impacts on the development of the child. Because of this women with epilepsy are highly encouraged to breastfeed their baby to get the same health benefits that other children who are breastfed get.
Changes in the body prior to and after menopause can affect seizure frequency. Before menopause (perimenopause) women may have an increase of seizures. After menopause 30% of women will have less seizures, 30% of women will have more, and 30% of women will have the same amount.
All women have a decrease in bone density as they age. Sometimes this could lead to osteoporosis or fractures. Women with epilepsy are at a higher risk for this. The reason is not clear but it has particularly been seen in women taking phenytoin (Dilantin),phenobarbitol, primidone (Mysoline), carbamazepine, benzodiazepines, and valproic acid. However increasing calcium and vitamin D intake can help prevent the risk of excessive loss of bone density.
It was noted that long-term studies are still being done about issues that can affect women with epilepsy. The results are continually being released and getting more detailed and give more insights as to the issues that women with epilepsy face.
For more information about woman and epilepsy and to keep up-to-date on new research findings about women’s health, please see our Women in Mind webpage.
Please stay tuned for our next blog entry - it will be about men's issues and epilepsy.