Epilepsy is a complicated condition, and does not affect everyone in the same way. Women can sometimes have unique seizure treatment and management needs due to hormones, contraception and pregnancy. This page provides a range of information about epilepsy and women.
Whether you are a person living with epilepsy, care for someone who does, or are an interested community member, we hope that you find this information useful.
Epilepsy And Hormones
Some women may experience shifts in their seizure activity due to hormonal changes, particularly during puberty, ovulation and menopause. Oestrogen and progesterone,which are female reproductive hormones, can have an effect on seizures because they interact with brain cells. It is still unknown how these hormones impact brain cells. However, when the body is making more oestrogen, brain cells become stimulated and this can result in a higher risk of seizures in some women.
Some women may have their first seizures during puberty, and this can be linked to changing hormones. Some may have catamenial epilepsy, which is a form of epilepsy where seizures are affected by a woman’s mentrual cycle.
Hormonal changes also occur during pregnancy, but most women will retain their previous level of seizure control. Some may experience an increase, decrease or change in seizure activity. This can be associated with hormonal and/or medication changes.
There are mixed reports about how, and to what extent, perimenopause and menopause will affect someone’s epilepsy. Oestrogen levels drop during these stages but it doesn’t always mean a woman will have fewer seizures. Sometimes women experience a worsening of seizures while others may find that their epilepsy improves.
It is important to discuss with your doctor any changes in your seizure activity, regardless of your age or life stage.
Planning for pregnancy can be a very exciting time for women with epilepsy will have a successful pregnancy and give birth to a healthy baby. However, it is important to be informed and prepared as possible, which means discussing with your doctor/s how your epilepsy and treatment could affect your pregnancy.
If you have epilepsy, the risks associated with pregnancy do not mean you cannot have a baby. To increase your chances of a healthy pregnancy, it is strongly recommended that you plan ahead in consultation with your healthcare support team, especially your neurologist.
If you experience an unplanned pregnancy, consult with your healthcare support team as soon as possible for advice. When planning a pregnancy, the first thing you should do is arrange a consultation with your neurologist. In this appointment your doctor may want to consider the following questions:
- Do you have the correct epilepsy diagnosis?
- Are your seizure managed effectively?
- Are you on the lowest possible dose of medication for managing your epilepsy?
- Are you likely to experience changes in your seizure activity?
- Does your medication need to change before conception?
- Will you have any additional epilepsy support needs during pregnancy?
For most women seizure activity does not increase during pregnancy. However, the physical and emotional stress associated with pregnancy can have an impact on your seizures, which can be due to changing sleeping habits and medication absorption issues. Changes in body weight, hormones and metabolism may also affect the seizure threshold and efficacy of AEDs. Your doctor may be concerned about these issues because it is very important to have the best possible seizure control and be on the safest AED prior to becoming pregnant.
Contraception – AEDs And Birth Control
Some AEDs (those that are ‘enzyme-inducing’) can make certain forms of birth control (including the morning after pill) less effective and increase the risk of an unplanned pregnancy. Enzyme inducing AEDs include:
- Carbamazepine (Tegretol)
- Lamotrigine (Lamictal)
- Oxcarbazepine (Trileptal)
- Phenobarbitone (PhenobarB)
- Phenytoin (Dilantin)
- Perampanel (Fycompa)
- Primidone (Mysoline)
- Rufinamide (Inovelon)
- Sodium valproate (Epilim, Valpro)
- Topiramate (Topamax)
The impact of taking hormonal contraception varies among women. Some women find that hormonal birth control increases seizure activity, whereas for others it decreases seizures or has no impact at all. So, if you are considering contraception or already using contraception it’s a good idea to chat with your doctor about which method is right for you and why. You may also want to visit the NPS Medicinewise website for further information about medications.
Contraception That Can Be Affected By AEDs
A number of hormonal contraceptive methods can become less reliable when taking certain AED’s and increase your risk of an unplanned pregnancy. These include:
- Combined oral contraceptive pill (‘the pill’). ‘The pill’ contains oestrogen and progesterone hormones and works by preventing the ovaries from releasing an egg each month. Some AEDs make the pill less effective. It may be recommended that a higher dose of the pill is taken, or an alternative birth control method used instead.
- Progesterone-only pill (‘mini pill’). The ‘mini pill’ contains the hormone progesterone and considered less effective than the combined pill. It not recommended as birth control if you are taking certain AEDs.
- Emergency contraceptive pill (‘the morning after pill’). The ‘morning after pill’ is a form of emergency contraception that can be taken within the first 72 hours after sex. Some AEDs can reduce its effectiveness, so it is a good idea to discuss the AEDs you are taking with the pharmacist if you are accessing the ‘morning after pill’.
- Contraceptive implant. These implants contain progesterone and are implanted under the skin in the arm. The contraceptive effectiveness of implants may be affected some AEDs.
- Vaginal Ring. This soft plastic ring contains the hormones oestrogen and progesterone. Like the combined oral contraceptive pill it works to prevent the ovaries from releasing an egg each month. This may not be an effective method of birth control if taking certain AEDs.
- Natural contraception (‘rhythm method’). Natural contraception means working out which times in your menstrual cycle are ‘safer’ times to have sex. This method can be affected by hormonal changes in the body and it can be unpredictable. Because of this it is not recommended if you are taking AEDs.
It is important to remember that hormonal contraceptive methods do not give protection from sexually transmitted diseases (STIs). For more information about this visit Family Planning SA or Shine on 08 8300 5300
Contraception Methods Not Affected By AEDs
- contraceptive injections (such as Depo Provera). Women with epilepsy often have an injection every 10 weeks.
- Intra-uterine devices such as a Mirena IUD.
Lamotrigine (Lamictal) And Contraception
Some oral contraceptives can affect how well AEDs work. Some studies have shown that oral contraceptives affect how much lamotrigine (Lamictal) stays in your blood. If you are taking this medication, other forms of contraception such as condoms, diaphragms, contraception injections or Intra-uterine devices may be more suitable for you.
Pregnancy And Anti-Epileptic Drugs (AEDs)
When planning pregnancy, it is very important not to stop taking your AEDs without the guidance of a medical professional.
In Australia, approximately 1,500-2,000 women taking AEDs become pregnant each year, and more than 94% deliver a healthy baby. However, taking some AEDs such as sodium valproate (Epilim) during pregnancy, results in a much higher risk of having a baby with a major malformation, or a child who has problems with development and learning.
Your doctor may encourage you to change the dose or type of AED prior to you attempting to conceive, as some medications are safer for the foetus than others. Your doctor may also encourageyou to take folic acid well before you try to conceive. This can reduce the risk of some congenital abnormalities.
Some anti-epileptic drugs (AEDs) may also reduce sperm production and quality in some men,which can lower their fertility.
Risk Management Throughout Pregnancy
Your doctor may encourage you to manage the risks associated with your pregnancy by doing the following:
- Attending regular visits throughout your pregnancy with your neurologist and obstetrician
- Continuing to take folic acid as prescribed by your doctor
- Reporting any changes to your seizure control to your doctor
- Monitoring the level of AEDs in your blood to determine whether they are at an adequate dosage, as well as modifying the dosage, drug dose (older AEDs more commonly than the newer AEDs) where appropriate.
The Australian Pregnancy Register (APR) is an independent project that has been running nationally since 1999.
We are an observational study and collect information via a series of telephone interviews about pregnant women with epilepsy, treated and untreated, to determine which AEDs are safest for the baby while protecting the mother from seizures.
As a result of this study we are getting closer to defining safer treatment choices.
The Register would benefit from a boost to the number of women participating in the study to ensure enough evidence is collected for the findings to become treatment guidelines.
This a voluntary, nationwide study that is enrolling women who are currently pregnant or who have given birth recently (infants up to 12 months of age) in the following categories:
- Women with epilepsy taking antiepileptic medication (AEDs)
- Women with epilepsy not taking AEDs
- Women taking AEDs for other conditions
Please click the link below to complete a registration form and a research Coordinator will make contact to discuss enrolment.