NSE : Information on epilepsy: Women and epilepsy

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Information on epilepsy: Women and epilepsy

'Women with epilepsy, and their doctors, are aware that there are issues around epilepsy and its treatment which are specific to women'

NSE gratefully acknowledges the contribution of the UK Epilepsy and Pregnancy Register in producing this information.

Words in the main text in bold are defined in the glossary of terms at the bottom of the page.

An introduction to women and epilepsy

Many women with epilepsy, and their doctors, know that there are issues around epilepsy and its treatment which are specific to women, and do not apply to men.

This page looks at those issues that are specific to women, including puberty, contraception and the menopause. For more information, see our page on pregnancy and parenting.

Why are women different?

Epilepsy can happen to anyone at any time. Research has shown a close link between hormones and seizures for some women. A woman’s hormone levels can change throughout her life: during puberty, through
her menstrual cycle, during pregnancy, and during the menopause. A change in hormone levels can affect when a woman’s epilepsy starts, how often her seizures happen, and if and when she stops having seizures.

It is these changes in hormones throughout a woman’s life that make the management of epilepsy in women often very different to men. It may also explain why treatment for epilepsy may change through a woman’s life.

On this page, when we refer to women this also includes girls.

Epilepsy and hormones

Oestrogen and progesterone are two hormones that are naturally produced in a woman’s body, which bring about her sexual development. These hormones can speed up or slow down brain cell activity, and can affect when a woman has seizures. When oestrogen levels are high and when progesterone levels are low, some women are more likely to have seizures.

Puberty

Puberty is the time in life when hormonal changes in the body cause sexual development to begin. It can be a common time for epilepsy to start.

During puberty, which happens from around 8 to 16 years of age, changes might also be happening in other areas of your life, such as school and friendships. This can be a time when you don’t want to feel different from your friends, and so 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 differ from one AED to another, and from one person to another. Some of the possible side effects can be particularly important to young women, as they can cause unwanted changes in appearance (such as weight gain or weight loss) and some can delay the start of periods, or affect the menstrual cycle.

If you have any concerns about taking AEDs, then talking this through with your paediatrician or neurologist may be helpful.

For more information about AEDS see our information on medication for adults and information on medication for children.

For more information for young people see our page your epilepsy - now & next.

Menstrual cycles and periods

Because of the changes in hormone levels that happen throughout the menstrual cycle, one in three women with epilepsy find 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. Seizure diaries are available from NSE.

Women with catamenial epilepsy may take an extra AED, in addition to their regular AEDs, for the week before and during the first few days of her period. If you have catamenial epilepsy, you can discuss options for treatment with your neurologist.

Polycystic ovary syndrome (PCOS)

Polycystic Ovary Syndrome (PCOS) is a common hormonal condition that happens when eggs from the ovary do not develop properly. Eggs are usually released every month during a period. For women with PCOS eggs are not released and they stay in the ovary and form non-harmful cysts. PCOS also causes higher levels of the hormone testosterone than normal, irregular or infrequent periods, weight gain and increased hair growth. It can also make becoming pregnant more difficult.

PCOS is more common in women with epilepsy than in women without epilepsy. It may also be more common in women who are taking the AED sodium valproate (Epilim). If you are concerned about PCOS, talking to your neurologist may be helpful as changing your AEDs can sometimes stop or reverse these effects. As for everyone
with epilepsy it is advisable to talk to your neurologist before making any changes to AEDs.

For more information about PCOS, contact Verity, a UK charity for women with PCOS.

Contraception

There are many different methods of contraception. Some methods may be less effective for women with epilepsy taking certain AEDs than for those not taking AEDs. This is because some AEDs affect how well some methods of contraception work. Some methods of contraception are not affected by any AEDs.

AEDs are either enzyme-inducing or non-enzyme-inducing. Generally, enzymeinducing AEDs are likely to affect some forms of contraception and non-enzyme-inducing AEDs are unlikely to affect any form of contraception.

Table 1. Enzyme-inducing AEDs

Drug (generic name)	Available as (brand name)
carbamazepine	Tegretol
oxcarbazepine	Trileptal
phenobarbital	no brand name
phenytoin	Epanutin
primidone	Mysoline
rufinamide	Inovelon
topiramate	Topamax

Enzyme-inducing AEDs are likely to affect methods of contraception that have hormones in them. This is because they increase the level of enzymes that break down hormones in the body (including the hormones in contraception). This means the hormones are broken down more quickly than usual, so they stay in the body for less time and are less effective. This could result in contraception not stopping pregnancy.

Table 2. Non-enzyme-inducing AEDs

Drug (generic name)	Available as (brand name)
acetazolamide	Diamox
clobazam	Frisium
clonazepam	Rivotril
ethosuximide	Zarontin
gabapentin	Neurontin
levetiracetam	Keppra
piracetam	Nootropil
pregabalin	Lyrica
sodium valproate	Epilim
tiagabine	Gabitril
vigabatrin	Sabril
zonisamide	Zonegran
lamotrigine

Contraception that could be affected by AEDs

The combined oral contraceptive pill - the Pill'

The combined oral pill contains oestrogen and progesterone. For any woman there are risk factors such as age, weight, high blood pressure and smoking that can cause side effects with taking the Pill. These factors can affect the choice of contraception to use.

Some AEDs can affect how well the Pill works. This depends on which AED is taken

Enzyme-inducing AEDs cause the hormones in the Pill to be broken down more quickly, so the Pill will not work as well in preventing pregnancy.
Non-enzyme-inducing AEDs do not affect the Pill so it can be a good type of contraception to use if you take non-enzyme-inducing AEDs.

If you are taking an enzyme-inducing AED, taking a double dose of the Pill with 30ug (micrograms) of oestrogen (so that you take 60ug of oestrogen in total) is advised, especially if the Pill is your only method of contraception. Even with a higher dose, the Pill on its own may not be completely effective in preventing pregnancy. So it is often best to use other methods of contraception as well, such as a barrier method.

If you bleed between your periods, it may mean that the dose of oestrogen is not high enough and the Pill may not prevent pregnancy. If bleeding happens, you can talk to your doctor about what to do.

Oestrogen can have a pro-convulsant (seizure-causing) effect in some women. So when a woman’s levels of oestrogen are high, there may be a higher risk of seizures happening. Although taking the pill can further increase the levels of oestrogen in your body, adding to the oestrogen already there, your body gets rid of the oestrogen from the Pill quickly so this doesn’t make you more likely to have seizures.

Lamotrigine - a special case

Lamotrigine is a non-enzyme-inducing AED. But, unlike other non-enzyme-inducing AEDs, it needs special consideration.

There is no evidence that the Pill affects epilepsy directly, but there is some evidence that the Pill lowers lamotrigine levels in the blood, and this could impair seizure control and lead to seizures happening.

Recent research suggests that lamotrigine can lower the amount of progesterone from the combined oral
contraceptive pill in the blood, but not the oestrogen. However, there is currently no evidence that lamotrigine reduces the effectiveness of the Pill.

The progesterone-only pill the mini pill'

The mini pill contains just progesterone. This pill is less effective against pregnancy than the combined pill, and this is particularly so if enzyme-inducing AEDs are taken. For these reasons the mini pill is not recommended as a form of contraception if you take enzyme-inducing AEDs or lamotrigine.

The morning-after pill

The ‘morning-after’ pill is a type of emergency contraception that is taken after unprotected sex. It can be prescribed by GPs, pharmacists and family planning clinics.

If you take enzyme-inducing AEDs, you will need a bigger dose of the morning-after pill than other women. The morning-after pill is a single tablet dose and you will need to take double the dose (2 pills rather than 1).

As a pharmacist or clinic may not know your medical history, telling them that you take AEDs will help them give you the right dose.

Contraceptive implants

Contraceptive implants, such as Implanon, contain progesterone and are implanted under the skin in the upper arm.

Implants can be affected by enzyme-inducing AEDs. So implants are not recommended as a form of contraception if you take enzyme-inducing AEDs or lamotrigine.

Contraceptive patches

The contraceptive patch Evra contains oestrogen and progesterone and so it works in a similar way to the combined pill. Like the combined pill, enzyme-inducing AEDs can affect the contraceptive patch, and so it may not be an effective form of contraception if you take enzyme-inducing AEDs.

The vaginal ring

The vaginal ring is a type of contraception that may become available in the UK. The ring, inserted into the vagina, works by releasing oestrogen and progesterone over 21 days. This type of contraception may be affected by enzyme-inducing AEDs, and so it may not be an effective form of contraception if you take enzyme-inducing AEDs.

Contraception not affected by AEDs

The following methods of contraception do not affect, and are not affected by, AEDs. Therefore, for women with epilepsy, these methods of contraception are more likely to be effective in preventing pregnancy than contraception that is affected by AEDs.

Barrier methods

Barrier methods of contraception create a physical barrier against becoming pregnant. These include condoms, femidoms, caps and diaphragms, and are not affected by AEDs.

Intrauterine devices (IUDs)

IUDs are devices that are fitted into the womb. They are not affected by AEDs.

Intrauterine systems (IUSs)

IUSs are devices fitted into the womb. Unlike IUDs, IUSs contain progesterone. An example of an IUS is the Mirena coil, which contains a slow release progesterone called levonorgestrel.

Although IUSs contain progesterone, they are not affected by AEDs because the hormone is released straight into the womb (rather than travelling around the body where it would be affected by the enzymes in your AEDs).

There may be a risk that a women could have a seizure while the IUS is being inserted. This is rare, and the risk is low.

If you are concerned about having an IUS fitted, you may want to think about whether taking someone with you would be helpful.

Contraceptive injections

Contraceptive injections, such as Depo Provera, contain progesterone. Although they contain progesterone, they are not affected by AEDs. This injection is given every 12 weeks.

Further information on contraception

The FPA (Family Planning Association) provides information about sexual health and contraception.

Starting a family

There are many issues around starting a family for women with epilepsy, including the effects of epilepsy and AEDs on both the mother and the baby.

If you are thinking about becoming pregnant, it can be helpful to have preconception counselling with your
neurologist. This is an opportunity to talk through these issues before becoming pregnant: to plan the pregnancy and review your epilepsy and its treatment.

See our information on epilepsy and pregnancy.

The menopause

The menopause is the time in a woman’s life when her periods stop and she can no longer become pregnant.

During the menopause, a woman’s body stops making natural hormones and this can cause symptoms such as hot flushes and mood swings. Hormone replacement therapy (HRT) is sometimes used to treat these symptoms. HRT contains either oestrogen, or a combination of oestrogen and progesterone.

Although when oestrogen levels are high this can cause seizures, the amount of oestrogen in HRT is small and usually not enough to cause seizures to happen. However, if you take HRT and you do have more seizures than usual, this could be related to the oestrogen in HRT. If this happens it might be helpful to discuss the HRT with your neurologist, and the possibility of using a combination of oestrogen and progesterone may be considered.

Having information and good medical care from a neurologist, GP or family planning clinic, is as important during the menopause as at every stage in a woman’s life. This can be an opportunity to discuss any queries or concerns about the menopause.

Osteoporosis

The mineral calcium is important for our bones. Vitamin D helps calcium to get into the bones, and it is calcium itself that helps to make bones strong. When calcium is lost, bones become thinner, more brittle, and break more easily. This process is called
osteoporosis.

Osteoporosis can happen to anyone but it is more common in women than men, especially after the menopause. It is also more common in women who take AEDs.

For women taking enzyme-inducing AEDs, having calcium and vitamin D levels checked every two-five years can help to see if there are any problems with calcium levels. In some cases, having a bone density scan (which looks for the possibility of osteoporosis) can be helpful. Calcium and vitamin D can be taken to try and replace the natural loss of calcium. If you are concerned about osteoporosis, talking to your neurologist about the possibility of calcium level checks and bone density scans might help.

For more information, contact the National
Osteoporosis Society.

Osteoporosis during the menopause

If osteoporosis happens when a woman goes through the menopause, HRT containing oestrogen, or a combination of oestrogen and progesterone, may be prescribed. HRT is generally used to relieve the symptoms of the menopause, but it might also help to protect against osteoporosis at this time.

Throughout all stages of your life, information and support can help you to make informed choices about your life, and the treatment and management of your epilepsy.