Women with epilepsy face some different issues to men with epilepsy. Many women find that their seizures are affected by hormonal changes.
The following general information aims to make it easier to ask questions when visiting your doctor or specialist.
Seizures and hormones
What do hormones have to do with epilepsy?
Both oestrogen and progesterone act on certain brain cells. Oestrogen excites the brain cells whereas progesterone, calms the brain cells down. Most of the time there is a balance between these hormones. However, when the oestrogen level is higher, during ovulation and menstruation, seizures are more likely to occur in some women.
The female reproductive hormones, oestrogen and progesterone, have an influence on seizures.
When seizures are exacerbated or occur exclusively during ovulation or just prior to or during menstruation it is called catamenial epilepsy.
Keeping a diary of your menstrual cycle and seizures is a good way of identifying if hormones are a seizure trigger for you. Try our online seizure diary, My Epilepsy Diary.
Although hormones generally do not cause seizures, they can influence their occurrence. This is why some women have seizures or changes in seizure patterns more often at times of hormonal fluctuations such as puberty, ovulation, menstruation or menopause.
Puberty is a time of complex physical, hormonal and emotional changes. Fluctuating hormone levels during puberty can affect seizure control. The physical changes and growth can also happen so quickly that the body may need a higher dose of medication. This may be a good time to have medication blood levels checked and the dose may need to be increased or changed.
Many women with epilepsy have a tendency to have more seizures at certain times of the menstrual cycle, particularly ovulation and just before or during menstruation. This may be due to:
- hormonal fluctuations,
- fluid retention,
- reduced blood levels of antiseizure medications before menstruation,
- sleep disruption
- and possibly pre-menstrual tension or stress.
Menstrual changes have been identified in 30-50% of women with temporal lobe epilepsy as compared to 7% of women without epilepsy. These can include irregular menstrual cycles, an absence of menstruation or prolonged or shortened menstrual cycles.
Catamenial epilepsy means that seizures are exacerbated or occur exclusively in relation to the menstrual cycle.
Some women with epilepsy may find it more difficult to become pregnant. There are many different causes of this reduced fertility including an irregular menstrual cycle, having epilepsy, taking certain medications or multiple medications, or other associated conditions such as polycystic ovary disease.
Polycystic Ovary Syndrome
There are two conditions: Polycystic Ovaries (PCO), and Polycystic Ovary Syndrome (PCOS)
- Polycystic ovaries (PCO) means multiple ovarian cysts are seen on ultrasound.
- PCOS is a metabolic condition that may or may not come with having polycystic ovaries.
Polycystic ovary syndrome (PCOS) is a reproductive disorder that results in lower fertility. Women with epilepsy can have features of PCOS and polycystic ovaries (PCO) at a higher rate than the general population.
*An ovarian cyst is a fluid filled sac that occurs in or on an ovary.
The symptoms for PCOS can include:
- Excessive hair growth on the face, chest, abdomen
- Hair loss, in a classic “male baldness” pattern
- Polycystic ovaries (seen on ultrasound)
- Obesity, particularly central obesity (being apple-shaped)
- Infertility or reduced fertility
- Irregular or absent menstrual periods
Taking sodium valproate (Epilim) can increase the risk of weight gain, elevated testosterone levels and menstrual abnormalities which are features of PCOS. There is no evidence it causes PCOS but it can increase the risk.
Speak to your doctor if you have concerns about these symptoms. For more about PCOS
Some antiseizure medications and hormonal contraceptives may affect each other’s metabolism and how they work. This has the potential to increase the risk of seizures, medication toxicity or an unplanned pregnancy.
This does not mean that women with epilepsy cannot use hormonal contraception it means that they may need use one that is suited to their antiseizure medication.
Antiseizure medications that can reduce the effectiveness of oral and subdermal implant contraceptives*
- Carbamazepine (Tegretol)
- Lamotrigine (Lamictal)
- Oxcarbazepine (Trileptal)
- Phenytoin (Dilantin)
- Primidone (Mysoline)
- Topiramate (Topamax)
Antiseizure medications that do not interfere with oral and subdermal implant contraceptives (according to current data)*
- Acetazolamide (Diamox)
- Clobazam (Frisium)
- Clonazepam (Rivotril, Paxam)
- Diazepam (Valium)
- Ethosuximide (Zarontin)
- Gabapentin (Neurontin)
- Lacosamide (Vimpat)
- Levetiracetam (Keppra)
- Pregabalin (Lyrica)
- Sulthiame (Ospolot)
- Tiagabine (Gabitril)
- Vigabatrin (Sabril)
- Zonisamide (Zonegran)
Antiseizure medications that may have a limited clinical interaction and in some people may require additional contraceptive measures to be discussed with your prescribing doctor*
- Sodium Valproate (Epilim)
* Source: NSW Medicines Information Centre – Drug Information Pharmacist 16 Feb 2011 and The Treatment of Women with Epilepsy
It may be worth considering long acting reversible contraceptives in women with epilepsy taking certain antiseizure medication. This is something you should discuss with your specialist.
Morning after pill
Women taking certain antiseizure medication may require a higher dose of the morning after pill than other women. Always tell the pharmacist what medications you are taking.
It is not recommended to use this medication as a routine contraceptive method.
Non- hormonal contraception
Epilepsy and antiseizure medications do not hinder the effectiveness of the intrauterine contraceptive device (IUD), cervical cap, diaphragm or condoms.
If you are thinking about having a baby it is best to be informed and prepared. This gives you time plan to make changes to medication, lifestyle and work if you need to – and to try and get seizures controlled as best as possible.
People worry about having seizures during pregnancy, but in two-thirds of women the number of seizures stays the same during pregnancy, in 17% there is an increase in seizures, and in 16% seizure frequency decreases.
A few points
- Over 93% of women with epilepsy can expect to have normal healthy babies.
- Less than 20% of women with epilepsy will have an increase in the number of seizures during pregnancy. Most women will not notice any change in their seizures.
- It is desirable to get the best possible seizure control before falling pregnant. Wait until any medication changes are stable before trying to conceive.
- There is no evidence that focal seizures or absence seizures are a risk to the unborn baby. However, tonic-clonic seizures are potentially harmful to both mother and baby.
- It is preferable, but not always possible, to be taking only one antiseizure medication during this period. Both the neurologist and obstetrician will be involved in reviewing your medications.
- Because folic acid is thought to reduce the risk of birth defects it is wise to start taking a recommended dose and be in good general health at least one month before conception.
- Monitoring of medication levels may be necessary because of changes in metabolism of the antiseizure medication during pregnancy.
- For more see the factsheet Epilepsy and Pregnancy and go through the Pregnancy Checklist
A note about sodium valproate (Epilim):
Sodium Valproate a medication known to increase the risk of birth defects and developmental disorders for an unborn baby. This is a commonly used medication for epilepsy and provides effective seizure control for many people. It is recommended that sodium valproate should not be used in pregnancy unless the woman has a form of epilepsy that is unresponsive to other anti-epileptic medications. If you are taking this medication before pregnancy, it is best to change medication, but if no other medication controls your seizures well, then your neurologist will advise you about the safest dose for your baby.
The Australian Pregnancy Register for women taking antiseizure medication is conducting continuing research on the incidence of birth defects from pregnancies of women taking these medications.
To register phone 1800 069 722.
This is very important as your epilepsy treatment should be reviewed well before pregnancy to have the best seizure control on the lowest but effective dose of suitable medication.
By working with your doctor, you can lessen any risks to you and your baby. This is an important time to ask questions.
Pregnancy can be a very emotional time in a woman’s life. If the pregnancy is not planned, it can raise many different feelings and emotions. Women with epilepsy may be worried about the effects the medication may have on the baby, or how they will cope with the extra stress of having a baby, and other impacts it can have.
It is important not to stop taking antiseizure medication as this can pose an even greater risk to both mother and baby.
If you find that you are unexpectedly pregnant, DO NOT stop taking your antiseizure medication, speak to your doctor immediately. Go to Unplanned Pregnancy for more information
What to do:
- Don’t panic and stop or change your dose of antiseizure medication – speak to your doctor
- Have your pregnancy confirmed
- Speak with your doctor – and discuss your options
- Get support from someone close to you or a counsellor
- Look after yourself, avoid alcohol, don’t smoke or take unnecessary or illicit drugs
- Look into your options and seek unbiased advice as soon as possible. Do not rush into a decision, but long delays may mean you have less options available to you
- Deciding to continue or end the pregnancy is a very personal decision based upon your individual situation, religious or cultural beliefs. Explore all possible scenarios before making a final decision
- Making a well-informed decision can help reduce stress and the emotional impact in a difficult situation
- Record any seizure activity and attend follow up appointments with your doctor
Watch this short video about epilepsy and pregnancy
Read about Seizures in the Womb
When a woman goes through menopause, there are changes in the hormones produced by the ovaries, oestrogen and progesterone, it is likely this will affect seizures in some way.
For some women seizures may stop while others may have an increase in seizures, many women have no change in seizure frequency.
Menopause can bring about many symptoms including hot flushes, sleep difficulties and mood swings which are sometimes managed with hormone replacement therapy (HRT). HRT contains either oestrogen or a combination of oestrogen and progestogen.
Epilepsy is known to be hormone sensitive, and oestrogen is known to affect seizures for some women. The amount of oestrogen HRT contains is small and often not enough to trigger seizures, however many women with epilepsy do report an increase in seizures once commencing HRT.
If you take HRT and find you are having more seizures than usual, it may be related and you will need to discuss this with your neurologist to consider possible alternatives or different combination of HRT oestrogen and progestogen. Also bear in mind that some anticonvulsant levels may be lowered by the HRT.
Menopause can create sleep problems and quality of sleep, especially in women who experience hot flushes.
Sleep difficulties can increase significantly during the peri-menopause and menopause period. This can also affect seizures.
Menopausal women with epilepsy have an increased risk of osteoporosis and the role of HRT in preventing osteoporosis is particularly important for women with epilepsy. Some antiseizure medications can reduce bone density and some people with epilepsy are at risk of falls, and therefore at higher risk of bone fractures. Bone density testing may be recommended if you are on certain types of antiseizure medications. Osteoporosis can be treated but preventative measures are better. High calcium diet, calcium supplements and vitamin D have all been shown to assist with maintaining bone health, as well as regular exercise.
Discuss these options with the doctor to ensure they do not interfere with your antiseizure medication.
For more information:
EAA smartclips – Prof Cecilie Lander – Epilepsy and planning pregnancy, epilepsy and unexpected pregnancy
Women and Epilepsy – a comprehensive resource
Australian Women with Epilepsy – Facebook group
An online support group for women living with epilepsy to speak openly about what they are going through, with people that understand their story. Designed to encourage and support each other, be a shoulder to lean on, an ear to listen, as well as having a good laugh together and celebrating our successes. Go to the AWE website for further information as well.