As part of the EpiKNOW project, this resource was developed to help support conversations between woman with epilepsy and their Epilepsy Specialist Team during the preconception to postpartum period. The resource can be read and downloaded from our website via the button below.
A text version of this resource is also outlined below.
1) Outside of conception
After diagnosis:
- Appropriate information on sexual and reproductive health, including fertility, contraception, and family planning should be provided to you.
- Reminder that epilepsy itself is not a reason for infertility and decisions about whether to start a family are still appropriate, but this process requires a few more considerations (i.e., review of medications, seizure safety and potential for seizures.
Contraception:
- The potential for becoming pregnant and individual needs for contraception depending on circumstances should be routinely assessed upon indication of sexual activity.
- Contraception options and information on how they interact with epilepsy medication should be made available to you. This is because contraception effectiveness may be reduced by some Anti-Seizure Medications (ASMs). Further information can be found by visiting the 'Contraception' page on our website
- Folic acid should be prescribed to women of childbearing potential. The specific dosage and usage will be determined by your team.
- It is no longer advised to prescribe Valproate / Topiramate for women of childbearing potential, unless other treatments are ineffective or not tolerated. Find out more about Valproate by visiting the HPRA website
- For those whom Valproate / Topiramate is the only effective treatment, advice should be provided on the use of effective contraception, and warning provided about the risks of congenital malformations and neurodevelopmental disorders to children exposed to Valproate during pregnancy. You should share any plans for pregnancy with a healthcare professional at the earliest convenience.
2) Family Planning
- Family planning should be checked during consultations. If you have plans to start a family, the epilepsy specialist team should be told and a medication review conducted.
Be cautious that assumptions may be made (for example, if a woman is not married) about whether someone is thinking about starting a family. No matter the stage of life, you should contact the epilepsy team if there are plans to start a family in the next 12 months. - A member of the epilepsy specialist team should explain that family planning can take time (sometimes 12 months or more), especially if ASMs need to be changed. You do not need to be planning a pregnancy in the next year to get this information and it is advised to plan ahead as much as possible.
- Note: changes to ASMs could impact your seizure frequency, which could affect your lifestyle i.e., driving or spending long periods alone. Although it is not necessary, it may be useful to inform workplaces or friends/family.
- Preconception counselling should be offered, or given if you ask for it. In this counselling, details about the risks (including safety advice and cautioned about the risk of SUDEP - Sudden Unexpected Death in Epilepsy), safety advice regarding anti-seizure medications, and outcomes of pregnancy with epilepsy will be explained.
- Information should be given about ASMs and epilepsy in pregnancy. Some ASMs have good safety evidence, but some carry particular risk
3) During Pregnancy
- If you become pregnant, epilepsy medication should not be stopped under any circumstances. You should contact your epilepsy specialist team and GP to plan the next steps and appropriate referrals onto the maternity care team.
- Should you experience pregnancy sickness, this could interfere with medication adherence. Get into contact with your GP or maternity care team should this happen to seek further advice for each individual case. For more general information on pregnancy sickness, please visit the 'HSE' website
- Seizure patterns can change during pregnancy. As a general rule, one-third of women may have fewer seizures, one-third may stay the same, and one-third may have more seizures. Any changes in seizure frequency or concerns should be reported to your epilepsy specialist and maternity care teams.
4) Preparing for Birth
- Your epilepsy team should reassure you that the risk of a seizure during labour and birth is low (approximately1-2%).
- Information should be provided about how to manage your seizures during labour and birth and consideration for emergency prescription. This includes how to reduce seizure triggers and ensure antiseizure medication continues to be taken at correct times. The team should advise that an emergency supply of ASMs be brought in a hospital bag in case they are not available at the hospital at short notice.
- It is recommended that a labour and birth plan and a postnatal care plan be completed and discussed with the epilepsy specialist and maternity care team. You can download a birth plan designed specifically for women with epilepsy on our website.
- The team should highlight there are certain pain relief medications, such as pethidine, which should be avoided as they can increase the likelihood of seizure during labour and birth.
5) Postpartum
- Please ensure you have an existing appointment with your epilepsy team no longer than 3 months post the birth of your baby. This appointment will include a medication review. This is because mediation levels can change quickly postpartum and some changes may have been made during pregnancy to medication type and levels.
- Information should be provided regarding medication safety and breastfeeding.
- The team should encourage preconception advice be sought before planning another pregnancy.
Key Questions to consider
Can I still have children?
Epilepsy itself is not a reason for infertility and considerations to start a family are still appropriate, but this process requires a few more considerations (i.e., review of medications, seizure safety and potential for seizures).
What type of contraception is the most suitable for me?
Suitable contraception options are dependent on the type of antiseizure medications. For more information, visit the 'Contraception' page on our website.
When should I consider information on family planning?
At your earliest convenience. Even if you are not planning a family now, medication adjustments can take up to and beyond 12 months of planning, so it is best to start conversations earlier to be prepared.
What do I need to consider during family planning?
Each medication’s safety should be considered, and information about it should be given. Any changes to medication and how they might affect seizure frequency and safety during pregnancy should also be explained to you. This checklist can help you with preparing what to think about and ask.
What are my considerations during pregnancy?
Managing epilepsy during pregnancy may require additional blood tests, and changes in your medication or doses and maintaining a healthy lifestyle (e.g., good sleep hygiene) to reduce seizure risks. You must not stop taking your epilepsy medication during pregnancy.