Women with epilepsy have many questions about epilepsy and their own health, pregnancy, and the well-being of their children. The following information will help to provide you with general information and make it easier to ask questions when visiting your family doctor, neurologist, gynaecologist or obstetrician.
There are a number of different hormones within the body that control many natural processes such as bone and muscle growth, heart rate, hunger, emotions and menstrual cycle. The female reproductive hormones, oestrogen and progesterone, have a clearly established connection with seizures, whilst the effects of testosterone on seizures is not yet fully understood.
Many women with epilepsy have a tendency to have more seizures at certain times of the month.
There is evidence to suggest that polycystic ovaries are more common in women with epilepsy.
If a future pregnancy is planned it is advisable to be well informed.
Menopausal women are part of the fastest growing component of our society.
Seizures and hormones
Oestrogen and progesterone act on specific brain cells. Oestrogen excites the brain cells and can make seizures more likely to occur, whereas progesterone may inhibit or prevent seizures in some women. 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.
Keeping a diary of your menstrual cycle and seizures is a good way of identifying if hormones trigger them. Record when a seizure occurs, a description of the seizure and the day.
Puberty is a time of complex physical and emotional changes. These physical changes happen so quickly that a dose of anti-epileptic 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.
Adolescents should be an active participant in discussions and decisions made regarding their condition. They should understand potential dose related side effects so they can relay these to parents or the doctor if they occur.
This is a time of establishing self-identity, achieving independence and fitting in with peers. This may include experimentation with substances (eg. alcohol and drugs) that can increase the risk of having seizures and have an effect on the anti-epileptic medication. It is important to understanding these risks and realise the repercussions of taking alcohol and drugs, such as increased risk of seizures, injury and delays in obtaining a drivers license.
Many women with epilepsy have a tendency to have more seizures at certain times of the menstrual cycle.
This is often attributed to hormonal fluctuations, fluid retention, reduced blood levels of anti-epileptic medications pre-menstrually, sleep disruption and possibly pre-menstrual tension.
Menstruation changes have been identified in up to 33-50% of women with temporal lobe epilepsy. (7% of women without epilepsy) Changes occurring range from several months without menstruation to prolonged menstrual cycles (longer than 35 days) or short times between cycles. In these situations ovulation does not occur.
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 affect epilepsy 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.
Polycystic ovaries affect 6% of all women. There is evidence to suggest that polycystic ovaries are more common in women with epilepsy. There are some reports stating 20 – 40 % of women with epilepsy have polycystic ovaries.
There is no definitive reason for the higher incidence. Electrical epileptic discharges in the brain interfering with pituitary hormones and ovarian stimulation as well as the effects of the antiepileptic drugs especially sodium valproate are all seen as possible reasons.
The most important issue for women with epilepsy is to be aware of the following signs and symptoms so any symptoms can be discussed with the doctor.
- A menstrual cycle length shorter than 23 days or longer than 35 days.
- Mid-cycle menstrual spotting
- Weight gain
- Increase in body hair or thinning of scalp hair,
- Reduced sexual interest or difficulty in becoming aroused.
Oral contraception (contraceptive pill)
There are anecdotal reports but no scientific evidence to suggest hormonal contraception (the Pill) can influence epilepsy. However, the Pill is used to regulate the oestrogen levels and the menstrual cycle and therefore may influence seizure frequency in some women.
Some anti-epileptic drugs may interfere with the metabolism of oral contraceptives, making it less effective. This can lead to possible 'pill failure" and pregnancy. This does not mean that women with epilepsy cannot use the pill for contraception it means that they may need a higher dose pill.
Some anti epileptic drugs do not interfere with the metabolism of the contraceptive pill, so a low dose oral contraceptive pill, or mini pill (progestogen only) can be taken.
Antiepileptic drugs that can interfere with oral and subdermal implant contraceptives*
- Carbamazepine (Tegretol, Tegretol CR, Teril, Caramazepine Sandoz)
- Lamotrigine (Lamictal, Elmendos, Lamidus, Lamogine, Lamotrust, Seaze, Apo-Lamotrigine, GenRx Lamotrigine, Lamotrigine generichealth, Lamotrigine Sandoz, Lamotrigine-GA)
- Oxcarbazepine (Trileptal)
- Phenytoin (Dilantin)
- Primidone (Mysoline)
- Topiramate (Topamax, Tamate, Epiramax, APO-Topiramate, RBX Topiramate, Topiramate Sandoz, Topiramate-GA)
Antiepileptic drugs that do not interfere with oral and subdermal implant contraceptives*
- Acetazolamide (Diamox)
- Clobazam (Frisium)
- Clonazepam (Rivotril, Paxam)
- Diazepam (Valium, Antenex, Chemmart Diazepam, Diazepam-GA, GenRx Diazepam, Ranzepam, Terry White Chemists Diazepam, Valpam)
- Ethosuximide (Zarontin)
- Gabapentin (Neurontin, Nupentin, Pendine, Gantin, Gabatine, Gabaran, Gabahexal, APO-Gabapentin, Chemmart Gabapentin, DBL Gabapentin, Douglas Gabapentin, Gabapentin Sandoz, Gabapentin-GA, GenRx Gabapentin, Terry White Chemists Gabapentin)
- Lacosamide (Vimpat)
- Levetiracetam (Keppra, Kepcet, Kevtam, Levecetam, Levitam, APO-Levetiracetam, Chemmart Levetiracetam, Levetiracetam Generichealth, Levetiracetam SZ, Terry White Chemists Levetiracetam)
- 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, Valproate Winthrop, Sodium Valproate Sandoz)
* Source: NSW Medicines Information Centre – Drug Information Pharmacist 16 Feb 2011
Morning after pill
As like the oral contraceptive women taking enzyme inducing antiepileptic drugs will require a higher dose of the morning after pill than other women.
Persona and rhythm methods
The persona/rhythm method relies on testing urine for hormonal changes indicating ovulation. The rhythm method depends on identifying hormonal changes. As hormones can be affected by both epilepsy and antiepileptic drugs these methods of contraception are not recommended.
Non hormonal contraception
Epilepsy and antiepileptic drugs do not hinder the effectiveness of the intrauterine contraceptive device (IUD), cervical cap, diaphragm or condom.
If a future pregnancy is planned it is advisable to be well informed. 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, generalised tonic-clonic seizures are potentially harmful to both mother and fetus.
- It is preferable, but not always possible, to be taking only one anti-epileptic 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 well before conception.
- Monitoring of drug levels may be necessary because of altered metabolism of the anti-epileptic drugs during pregnancy.
The Australian Pregnancy Register for Women on Anti-epileptic medication is conducting research on the incidence of birth defects from pregnancies of women taking these medications.
To register phone 1800 069 722.
It is advisable to be well informed prior to falling pregnant and plan your pregnancy well in advance.
Pregnancy can be a very emotional time in a woman’s life. If the pregnancy is not planned, it can raise many different feelings such as shock, joy, fear or confusion about what to do and where to start. Women with epilepsy taking antiepileptic medication may be worried about the effects the medication may have on their unborn child, or how they will cope with the extra stress of having a baby, and the financial impact 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 child.
If you find that you are unexpectedly pregnant, DO NOT stop taking your antiepileptic medication, consult your doctor.
What to do:
- Do not panic and stop taking or change your dose of antiepileptic medication – speak to your doctor
- Have your pregnancy confirmed with a urine, blood test or even ultrasound
- Count the number of weeks since the first day of your last period to calculate how many weeks pregnant you are
- Speak with your treating 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
Menopausal women are part of the fastest growing component of our society. However, menopause and its effect on epilepsy has not yet been the subject of extensive research.
As we age there can be many causes for changes to seizure control. A lot of these will be unrelated to hormonal changes because there may be changes in metabolism and sometimes other medications are needed which may adversely interact with the anti-epileptic drugs. For some women seizures may cease while others may experience an increase.
Menopause is usually a process, not a sudden event and even a subtle change in seizure pattern during this time deserves an evaluation by the doctor.
The potential influences of menopause on women with epilepsy requiring discussion with your doctor include:
- The effect on seizure frequency and severity;
- The effect of anti epileptic drugs on menopause and the complications of HRT (Hormone Replacement Therapy) on seizures.
Epilepsy can begin at any age and may coincidentally begin during menopause. Some preliminary research has raised the possibility that some women have a greater risk of developing epilepsy during menopause.
HRT may be prescribed to alleviate some of the unpleasant symptoms of menopause. The essential question for women with epilepsy is what effect HRT will have on their epilepsy. If menopausal symptoms need treatment it would be advisable to discuss with the doctor the effect that HRT may have on seizure control.
Menopausal women are at risk of osteoporosis (thinning of the bones). Oestrogen decreases during menopause and this can change the metabolism of calcium.
Women with epilepsy who are menopausal have an additional risk factor for osteoporosis as some antiepileptic drugs are known to be associated with osteoporosis and similar problems.
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.
Discuss these options with the doctor to ensure they do not interfere with your anti epileptic medication.
For further information on pregnancy go to: www.birth.com.au
- Buchanan, N. Understanding Epilepsy. Simon & Schuster Australia 2002
- Epilepsy Foundation of America
- Marshall, F., Crawford, P. Coping with Epilepsy. Sheldon Press. London. 2000
- Morrell, M.J., Women with Epilepsy. A handbook of health and treatment. Cambridge University Press. United Kingdom 2003.
- Shorvon, S. Handbook of Epilepsy Treatment. Blackwell Science. Oxford. 2000
- EMIMS 2002
- NSW Medicines Information Service