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 GP, neurologist, gynaecologist or obstetrician.
Seizures and hormones
What does that have to do with epilepsy?
When the body is making more estrogen than progesterone, it can make the nervous system “excitable.” In other words, you could be at greater risk for seizures. The hormones aren’t actually causing the seizures, but they can influence when they happen.
A number of different hormones in a woman’s body control bone and muscle growth, heart rate, hunger, emotions and menstrual cycle.
The female reproductive hormones, oestrogen and progesterone, have an influence on seizures.
Both oestrogen and progesterone interact with brain cells. Oestrogen makes brain cells more excitable whereas progesterone, calms the brain cells down. So, most of the time there is a balance between these hormones. However, when the oestrogen level is higher, seizures are more likely to occur. These times are during ovulation and menstruation.
When seizures have a strong connection with hormones and are exacerbated or occur exclusively during ovulation or just prior to or during menstruation it is termed catamenial epilepsy. Keeping a diary of your menstrual cycle and seizures is a good way of identifying if hormones trigger them. 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 frequently at times of hormonal fluctuations such as puberty, ovulation, menstruation or menopause.
Puberty is a time of complex physical, hormonal and emotional changes. These physical changes happen so quickly that your body may need a higher dose of medication. a dose of antiepileptic medication that worked previously may no longer do so. This may be a good time to have the 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 antiepileptic 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 at ovulation or just prior to or during menstruation.
Identifying hormonal influences on seizure frequency is important and can influence treatment. Keep a record of both the menstrual cycle and when seizures occur as this may help to predict when seizures are likely to happen.
Some women with epilepsy have a slightly lower fertility rate than the general population. This means that they may find it more difficult to become pregnant. There are many different causes of reduced fertility. These can include having epilepsy itself, or taking certain or multiple antiepileptic drugs 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 at a higher than expected rate, and polycystic ovaries (PCO) also are also present at high rates in this population. An ovarian cyst is a fluid filled sac that occurs in or on an ovary.
Sodium valproate (Epilim) is associated with weight gain and increased testosterone levels, two features of PCOS.
This is one of the many reasons why sodium valproate should not be prescribed to girls or women who are pregnant, or who may become pregnant in the future, unless other antiepileptic drugs do not control seizures, or cause unbearable side effects.
The symptoms for PCOS. These 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
Speak to your doctor if you have concerns about these symptoms. For more about PCOS
Oral contraception (contraceptive pill)
Some women report that hormonal contraception (the Pill) can influence their seizure. The oral contraceptive pill is used to regulate oestrogen levels and the menstrual cycle and therefore may influence seizure frequency in some women.
Some antiepileptic medications and hormonal contraceptives may affect each other’s metabolism, making it less effective, leading to either loss of seizure control, medication toxicity or 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 antiepileptic medication.
Antiepileptic drugs that can reduce the effectiveness of oral and subdermal implant contraceptives*
- Carbamazepine (Tegretol, Tegretol CR, Teril, Caramazepine Sandoz)
- Lamotrigine (Lamictal, Elmendos, Lamidus, Lamogine, Lamotrust, Seaze)
- Oxcarbazepine (Trileptal)
- Phenytoin (Dilantin)
- Primidone (Mysoline)
- Topiramate (Topamax, Tamate, Epiramax)
Antiepileptic drugs that do not interfere with oral and subdermal implant contraceptives*
- Acetazolamide (Diamox)
- Clobazam (Frisium)
- Clonazepam (Rivotril, Paxam)
- Diazepam (Valium, Antenex, Diazepam-GA, Ranzepam, Valpam)
- Ethosuximide (Zarontin)
- Gabapentin (Neurontin, Nupentin, Pendine, Gantin, Gabatine, Gabaran)
- Lacosamide (Vimpat)
- Levetiracetam (Keppra, Kepcet, Kevtam, Levecetam, Levitam)
- Pregabalin (Lyrica)
- Sulthiame (Ospolot)
- Tiagabine (Gabitril)
- Vigabatrin (Sabril)
- Zonisamide (Zonegran)
Antiepileptic drugs 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, Valprease, Valpro)
* Source: NSW Medicines Information Centre – Drug Information Pharmacist 16 Feb 2011
It may be worth considering long acting reversible contraceptives such as Depo Provera® injection, intrauterine device (IUDs), and Mirena® in women with epilepsy taking certain antiepileptic drugs. This is something you should discuss with your doctor.
Morning after pill
Women taking enzyme inducing antiepileptic drugs will require a higher dose of the morning after pill than other women. It is not recommended to use this medication as a routine contraceptive method.
Non- hormonal contraception
Epilepsy and antiepileptic medications do not hinder the effectiveness of the intrauterine contraceptive device (IUD), cervical cap, diaphragm or condom.
If a future pregnancy is planned it is best to be well informed and prepared. In brief:
- Over 93% of women with epilepsy can expect to have normal healthy babies.
- Approximately 25-30% 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 establish the best possible seizure control prior to conception.
- There is no evidence that focal seizures or absence seizures result in increased risk to the foetus. However, tonic-clonic seizures are potentially harmful to both mother and baby.
- It is preferable, but not always possible, to be taking only one antiepileptic medication. Both the neurologist and obstetrician will be involved in reviewing the 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 altered metabolism of the antiepileptic drugs during pregnancy.
The Australian Pregnancy Register for women on antiepileptic medication is conducting continuing research on the incidence of birth defects from pregnancies of women taking these medications.
To register phone 1800 069 722.
Pre-pregnancy counselling is very important as epilepsy management 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 taking antiepileptic medication 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 may have.
Given that most women do not find out that they are pregnant until 5-11 weeks into the pregnancy – when the most sensitive period of development has occurred, it is important not to stop taking AED’s 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 antiepileptic medication, consult your doctor immediately.
What to do:
- Do not panic and stop or change your dose of antiepileptic medication – speak to your doctor
- Have your pregnancy confirmed
- Count the number of weeks since the first day of your last period to calculate how many weeks pregnant you are
- Speak with your doctor – and discuss your options
- Get support from a trusted partner, friend, family member, health care provider or specially trained counsellor. Talking about feelings, both positive and negative, with trusted friends and family members can be enormously helpful.
- Look after yourself, avoid alcohol, stop smoking, don’t take unnecessary or illegal drugs
- Become well informed by looking 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 and imagine yourself in each situation 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
A woman goes through menopause when the ovaries stop releasing eggs, causing the body to stop making natural hormones. Because 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 symptoms such as hot flushes 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 with hot flushes.
Sleep problems increase significantly as women move from pre-menopause to peri-menopause. This can also affect seizures.
Menopausal women with epilepsy have an increased risk of osteoporosis.
The role of HRT in preventing osteoporosis is particularly important for women with epilepsy. Some antiepileptic drugs 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 antiepileptic drugs. 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 antiepileptic medication.
For more information:
EAA factsheet – Seizure Smart – Women
EAA factsheet – Seizure Smart – Parenting with epilepsy