5 things you need to know about women with epilepsy

  • August 6, 2020
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From Olympic ice hockey champions like Chanda Gunn to singers like Susan Boyle, there are so many inspirational women with epilepsy out there.

Everyone experiences epilepsy differently, but there are certain experiences that are unique to women. Here are five things you need to know about epileptic seizures in women.

1.  Differences between men and women with epilepsy

Various studies have shown that epilepsy is slightly less common among women than men (there are 6.5 males with epilepsy per 1,000, compared with 6.0 females per 1,000). This may be because men are more likely to experience head trauma or alcohol-related seizures.

There is not a huge difference between the kinds of seizures in women and men, although women tend to experience things like déjà vu more often than men as part of their auras. Women are also more likely to experience photosensitive epilepsy.

2.  Epilepsy and seizures during the menstrual cycle

According to the Epilepsy Foundation, around half of women notice that their seizures are linked to changes in their monthly period (this is called Catamenial epilepsy).

Researchers are not entirely sure why this happens, but believe it is linked to hormones (chemicals that regulate how your body works). At certain times of the month, you will have more of the hormones estrogen and progesterone in your body – and studies show that higher levels of estrogen can be a cause of seizures.

Use Epsy to see if there is a pattern between your seizures and cycle.

3.  Birth control for women with epilepsy

If you manage your seizures with antiepileptic drugs (AEDs) it is important to know that certain AEDs can make contraceptive pills less effective (a list is available here). Fortunately, there are several alternative contraceptives which are not affected by your epilepsy medication – including condoms and other barriers, IUDs (sometimes called ‘the coil’), implants and hormone injections. Speak to your gynecologist about the right option for you.

4.  Pregnancy and fertility

The vast majority of women with epilepsy can have a safe and healthy pregnancy. That said, the risk of having problems is slightly higher for women with epilepsy than for others. This is at least in part because AEDs can affect how the fetus (the baby in the womb) develops. It is therefore very important that you speak with your epilepsy doctor, your gynecologist and your obstetrician about how to plan your pregnancy, so it is as safe as possible.

5.  Changes in your body and treatment

There are a number of important changes that happen in your brain and body during puberty, pregnancy and the menopause. During these times, the levels of hormones in your system may go up or down. These changes could affect how your anti-epileptic medication works, and it could mean that your treatment plan evolves alongside these changes. 

It is therefore important to speak to your treatment team frequently and note down any changes you notice in your seizures, or side-effects from medication.

Support for women with epilepsy

In many states, there are local support groups available for women with epilepsy, where you can speak with doctors and other women in your area. Search online or speak with your treatment team to ask if they can tell you about women’s support groups. With more support, we can all gain new knowledge and confidence on our journey with epilepsy.

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