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hormones, puberty and menstruation

Changes in hormone levels means that epilepsy treatment may need to change through a woman’s life.

In this section, when we refer to women, this also includes girls of childbearing age. 

Hormonal influences

Research has shown that for some women with epilepsy there may be a close link between hormones and epileptic seizures. Hormone levels can change throughout a woman's life and may affect when her epilepsy starts, how often her seizures happen, and if and when she stops having seizures.

Changes in hormone levels through a woman's life can mean that managing epilepsy is different to how it is managed for men. It may also explain why treatment for epilepsy may need to change throughout a woman's life.

Epilepsy can be different for everyone. Changing hormone levels may affect some women and not others. Oestrogen and progesterone, two hormones that are naturally produced in a woman's body can speed up or slow down brain activity and can affect when a woman has seizures.

If you have questions about how hormones may affect your epilepsy, you may want to talk to your doctor or you might like to call our confidential helpline.

Epilepsy and puberty

Puberty is the time in life when hormonal changes in the body cause sexual development to begin. During puberty, changes might also be happening in other areas of life, such as education and friendships. This can be a time when you don't want to feel different from your friends, and having epilepsy can be an added challenge.

Anti-epileptic drugs (AEDs) are usually taken to try and stop seizures from happening. As with any medication, AEDs can cause side effects in some people. Side effects may differ from one person to another.

Young women may be concerned about some possible side effects in particular. These can include unwanted changes in appearance, weight gain or weight loss, or side effects that can delay the start of periods, or affect the menstrual cycle.

Some side effects can affect an unborn baby. This may not seem relevant now for a young girl, but the paediatrician or neurologist may take this into account if a girl is likely to be taking AEDs for some time.

If you have concerns about taking AEDs, then talking to your paediatrician or neurologist may be helpful.

Menstrual cycles and periods

Because of the changes in hormone levels that happen throughout the menstrual cycle, one in three women with epilepsy finds that their seizures are affected by their periods.

Some women regularly have their seizures at a particular time during their menstrual cycle. This might be just before or during their period, or at another time, such as ovulation. Women who have their seizures only at these specific times during their menstrual cycle (and at no other time), may have catamenial epilepsy.

Keeping a seizure diary can help to keep track of seizures, to see if there are any patterns to when they happen.

Women with catamenial epilepsy may be prescribed the contraceptive injection Depo Provera. This may reduce seizures for some women as it stops their regular cycle. An extra AED, in addition to their regular AEDs may be prescribed for the week before and during the first few days of their period. If you have catamenial epilepsy, you can discuss options for treatment with your specialist.

Are you receiving the right information?

Our sodium valproate survey showed us that almost 70% of the women surveyed haven't received new safety warnings about the dangers of taking it during pregnancy. Read the sodium valproate guidelines

Girls and women under 50, are you taking sodium valproate? Please read about this important information...

Polycystic Ovary Syndrome

Polycystic ovary syndrome (PCOS) is a common hormonal condition where eggs from the ovary do not develop properly. Eggs are usually released each month during a period. For women with PCOS, eggs are not released and stay in the ovary forming non-harmful cysts. PCOS also causes higher levels of testosterone than normal, as well as irregular periods, weight gain and increased hair growth. It can also make becoming pregnant more difficult.

PCOS may be more common in women with epilepsy than women without epilepsy. It may also be more common in women who take certain AEDs such as sodium valproate, or who gain weight, which can be a side effect of some AEDs.

If you are concerned about PCOS, talking to your specialist might help, as changing your AEDs can sometimes stop or reverse these effects. As for everyone with epilepsy it is recommended that you talk to your specialist before making any changes to your AEDs.

For more information contact Verity (opens new window), the UK charity for women with PCOS.

Thinking about starting a family

Having epilepsy does not necessarily mean that starting a family will be any more difficult for you than for anyone else. However, it may mean that you have a few more things to consider, such as the effects of your epilepsy or your AEDs on you and your baby.

Preconception counselling

If you are thinking about becoming pregnant, it is essential to have preconception counselling with your neurologist or epilepsy specialist nurse. This is an opportunity to talk through your epilepsy treatment before becoming pregnant and to plan your pregnancy. You can also plan for when your baby arrives.

You may have questions about the type of medication you take, the dose, how being pregnant could affect your seizures and how seizures could affect your unborn baby.

See more about starting a family and pregnancy and epilepsy.

Taken from our Women leaflet. Order this leaflet from our online shop as part of our 'first five free' offer.