Click: women with epilepsy to join
18th May 2018: Latest recommendations from GOV.UK Valproate use for women & girls updated guidance with new toolkit including patient booklet and card about valproate risks. Important all women receive specialist review of their treatment & for a Pregnancy Prevention Plan to be in place for any girl or woman continuing this drug in the child-bearing years.
GOV.UK alert: women taking sodium valproate or valproic acid. The brand names are Epilim, Epilim Chrono, Epilim Chronosphere, Episenta, Epival, Depakote, Convulex, Kentlim, Syonell and Valpal. Click New valproate patient booklet There is specific information for girls and young women taking sodium valproate, click: Medicines for children.
Please obtain accurate information and advice from your GP, epilepsy specialist doctor or nurse before making any changes to your epilepsy medicines. This is so important as untreated epilepsy can lead to increased risk of serious harm from uncontrolled seizures. Information on long acting reversible contraception and why women with epilepsy are advised to plan pregnancy, on this page.
It is advisable that you receive support during the child-bearing years. It is important not to stop anti-epileptic drugs without seeking accurate advice from a doctor or epilepsy specialist due to risks of untreated epilepsy. If your diagnosis has not been reassessed in adult years, please discuss this with your GP before considering pregnancy.
It is important that you have the opportunity of having a medication review before pregnancy. However the type of epilepsy can limit choice of treatment. Some epilepsies, particularly generalised (genetic) may only respond to valproate. All women should receive accurate information about the possible effects of their antiepileptic drugs on a developing baby before they become pregnant.
Many women with epilepsy are understandably anxious about pregnancy. To help with your decision making, you should be provided with accurate evidence based advice about fertility, contraception, pregnancy, breast feeding and safe parenting. Feel reassured that the majority of women with epilepsy have normal pregnancies and birth healthy babies.
Epilepsy is a serious neurological disease in which unprovoked, unpredictable seizures occur as a result of sudden bursts of excessive electrical activity in the brain.
The diagnosis should either be made by a specialist paediatrician in childhood or a medical practitioner also with training and expertise in epilepsy, in adulthood, following at least two unprovoked (or reflex) seizures occurring more than 24 hours apart; or following one unprovoked seizure and a probability of further seizures similar to the general risk of recurrence (at least 60%) after two unprovoked seizures occurring over the next two years; or a diagnosis of an epilepsy syndrome .
Epilepsy is usually diagnosed before age 20 and over age 65; but can occur at any time. The symptoms are individual to the person they are affecting and dependant on where in the brain they start, and where the abnormal electrical activity spreads within the brain. If a seizure starts in one part of the brain, it is called focal and if it involves most of the brain at the outset of the seizure, it is called generalised. Sometimes people can have a combination of seizure types or their epilepsy cannot be classified. Further information about what epilepsy is, how it is diagnosed and treated and information to help you take control of your condition, can be obtained from these excellent support groups: Epilepsy Action, Epilepsy Society, Epilepsy Research, SUDEP Action, Epilepsy Scotland
No, seizures can be caused by a number of conditions including: syncope (fainting) due to a drop in blood pressure, lack of oxygen (anoxia) or a cardiac condition such as long QT wave. Syncope and non epileptic attack disorder characterised by disassociative seizures (also called non-epileptic seizures) are the leading causes of epilepsy misdiagnosis. If you have been diagnosed with a psychological cause for your seizures, do access excellent information and support from Non-epileptic attacks info: NEAD or Neurosymptoms.org. Please note that some people with known epilepsy can also experience non-epileptic seizures. Other causes of misdiagnosis include migraine, sleep disorders and paroxysmal movement disorders 
Metabolic disorders such as diabetes related to very low or high blood sugar; low sodium (salt); hypercalcaemia (high blood calcium levels) and thyroid dysfunction can provoke seizures. Many prescribed and unprescribed drugs, alcohol, some homeopathic drugs and recreational drugs can also lead to seizures.
Febrile convulsions (seizures usually related to raised temperature in the very young), stroke, head injury/trauma, meningitis, encephalitis, eclampsia, (a rare but serious cause of seizures in pregnancy), brain tumour, cerebral malaria, electric shock  and toxic shock syndrome are examples of conditions that can present with convulsive or non-convulsive seizures. This does not necessarily mean the person will go onto develop epilepsy however; having a history of any of these causal conditions can significantly increase the risk of developing epilepsy.
Yes; about 2,500 births occur annually to women with epilepsy in the UK.
The majority of women treated with antiepileptic drugs (AEDs) have good seizure control. However, it is important the GP refers you to a specialist if your epilepsy diagnosis and treatment has not been reassessed recently by an expert medical practitioner in epilepsy; if you are taking sodium valproate; if you have uncontrolled seizures despite taking medication; if you are taking more than one AED; if you have nocturnal seizures; if you have a history of prolonged seizures or if you have been more than two years seizure free whilst taking AEDs. If you do not meet any of these criteria, you can still ask for an expert opinion. A reassessment will provide advice to enable you to make a shared informed decision about your future treatment and management in preparation for pregnancy and parenting.
The majority of women have a healthy baby following a normal pregnancy and labour but it is important to reduce the risk of harm through careful pregnancy planning. AEDs can be associated with an increased risk of birth defects. The risk of these problems is often low but will depend on the type and number of AEDs prescribed; the dosage, family history of congenital malformations and other conditions such as thyroid disease and diabetes. Alcohol [4.5] and smoking  are also linked to an increased risk of congenital malformations and other complications in pregnancy. The risk of congenital malformations and a fetal anticonvulsant syndrome which can include developmental problems and intellectual disabilites, is particularly increased in women prescribed sodium valproate in pregnancy. Please click on GOV.UK Patient valproate booklet for further information if you are taking this medicine. Please note the brand names for sodium valproate and valproic acid are: Epilim, Epilim Chrono, Epilim Chronosphere, Episenta, Epival, Orlept, Syonell, Valpal, Kentlim, Depakote and Convulex. For any women or girl taking valproate GOV.UK the valproate pregnancy prevention programme aims to minimise risk that could otherwise occur through the use of valproate during pregnancy. If there is risk of pregnancy, it is recommended girls/women use long acting reversible contraception: click FPA patient guide. Check with your doctor that none of the other medications you take interact with the contraceptive implant. A guide for your doctor click: CEU Clinical Guidance: Drug interactions with hormonal contraception
Do not suddenly stop AEDs without seeking urgent medical advice from your GP/epilepsy specialist. Suddenly stopping AEDs can be associated with uncontrolled seizures resulting in serious harm and in rare cases, sudden unexpected death.
Some AEDs induce enzymes in the liver which reduce the effectiveness or oral contraceptives, the implant, emergency contraception, hormonal patches and the reliability of natural methods of contraception. In addition, the combined oral contraceptive can reduce the effectiveness of lamotrigine. Therefore, it is strongly recommended that you seek advice from your GP or contraception and sexual health clinic in advance of sexual activity to reduce the risk of unplanned pregnancy. Click on: Care of baby & you for more detailed contraception advice and Epilepsy Action contraception advice. Advice for your professional from: Drug interactions with hormonal contraception, Click: CEU Clinical Guidance and Multi-drug Interaction Checker Medscape.com drug/drug/interaction/checker
It is currently recommended in national guidelines in the UK that if you take antiepileptic drugs that your GP prescribes folic acid 5 milligrams once daily for three months before you stop contraception or if there is risk of unplanned pregnancy. The advice recommends that you continue this until you are 12 weeks pregnant as it is thought to reduce the risk of neural tube defects, including spinal bifida . This dosage of folic acid cannot be bought over the counter; it has to be prescribed by your GP who will ensure this is a safe drug and dosage for you to take with your antiepileptic drug regime. There is data that folic acid taken in pregnancy may reduce the risk of a child having autism in women taking AEDs however, further research is required in this area . Further research is also required into what is the safest dose of folic acid to recommend women with epilepsy take during pregnancy and whether the higher prescribed dose is safe and offers any extra protection [9,10].
Please click on links for further advice and risk reduction strategies
References & further reading
1. Fisher RS, Acevedo C, Arzimanoglou A et al (2014) A practical clinical definition of epilepsy. ILAE Official Report. Epilepsia 55(4): 475-482
2. Hernandez-Frau PE and Benbadis SR (2011) Pearls & oy-sters: errors in EEG interpretations: what is misinterpreted besides sharp temporal transients? Neurology 76: 57-e59.
3. Grell K, Meersohn A, Schüz J and Johansen C (2012) 'Risk of neurological diseases among survivors of electric shocks: A nationwide cohort study, Denmark, 1968-2008', Bioelectromagnetics 33(6): 459-465
4. Lacey J (2016) 'Reducing alcohol harm: early intervention and prevention', Community Practitioner 89(2): 26
5. Callanan C (2013) ''Binge drinking' among mothers raises number of children with fetal alcohol spectrum disorder', Learning Disability Practice 16(2): 6-7
6. Cope G (2015) 'How smoking during pregnancy affects the mother and fetus', Nurse Prescribing 13(6): 282-286
7. NHS Choices (2016) Why do I need folic acid in pregnancy? Health questions-NHS Available from: http://www.nhs.uk/chq/pages/913.aspx?categoryid=54
8. European Academy of Neurology. "Antiepileptic drugs during pregnancy: Folic acid could help to prevent autism." ScienceDaily. 31 May 2016
9. Asadi-Pooya AA (2015) Review: High dose folic acid supplementation in women with epilepsy: Are we sure it is safe?'. Seizure: European Journal Of Epilepsy 27: 51-53
10. Harden C, Pennell P, Koppel B, Hovinga C, Gidal B, Meador K, Hopp J, Ting T, Hauser W, Thurman D, Kaplan P, Robinson J, French J, Wiebe S, Wilner A, Vazquez B, Holmes L, Krumholz A, Finnell R, Shafer P and Le Guen C n.d., Management issues for women with epilepsy-Focus on pregnancy (an evidence-based review): III. Vitamin K, folic acid, blood levels, and breast-feeding. Epilepsia 50(5): 1247-1255
NICE clinical guideline 137 (2012) The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care.
Royal College of Obstetricians and Gynaecologists (2016) Epilepsy in Pregnancy. Green-top Guideline No. 68. Royal College of Obstetricians and Gynaecologists
SIGN guidelines (2015) Diagnosis and management of epilepsy in adults
Author: Morley K (2018) Preparing for pregnancy. Available from: www.womenwithepilepsy.co.uk
This website was founded by Kim Morley, an epilepsy specialist midwife practitioner in 2005. The process of rebuilding the website was started in June 2016 to benefit as many women with epilepsy as possible and the professionals who care for them.
Kim holds a weekly NHS, Women with epilepsy clinic in addition to running an epilepsy specialist nursing service at Hampshire Hospitals Foundation Trust, Florence Portal House, Royal Hampshire County Hospital, Romsey Road, Winchester, SO22 5DG. Further information contact: firstname.lastname@example.org
For the latest news click on: Professional page Visitor counter added on 19/08/16
Peer reviewed 'maternity epilepsy toolkit' available for free download. Designed to assist history taking; reduce risk, increase knowledge and awareness and provide a summary of management in pregnancy. For further information click: Professional page. This toolkit has been incorporated into the new RCM i-learn epilepsy in pregnancy module, Click: RCM i-learn. The first research project on the toolkit was submitted in Oct. 18 and awaiting assessment.
Cppyright: Kim Morley
Founder of website:
Kim Morley MSc, INP, RM, RN.
Advanced Clinical Practitoner
RCM National & Regional Award Winner, 'Mum's Midwife of the Year,' 2016. Based at: Royal Hampshire County Hospital, Winchester. Hampshire. SO22 5DG
Facebook support group, the big conversation: women with epilepsy
Women can self refer or be referred by a health professional. To action a professional referral, please see your GP or neurology team and ask them to contact me (details above) with your contact details & history summary.
In and out of area NHS referrals accepted. If distance/difficulties with transport is a problem, a telephone consultation can be arranged instead of seeing Kim in clinic.
2-3/11/18 SUDEP Action Prevent 21 Summit, collaboration of families, professionals, patient support groups, staff, trustees and MP's from SUDEP Action all passionate about reducing preventable deaths from epilepsy. Find out more: SUDEP Action
26/09/18 Valproate Pregnancy Prevention Programme: actions required now from GPs, specialists, and dispensers GOV.UK
12/09/18 Midwives do read my latest article and learn how you can optimise safety for women with epilepsy British Journal of Midwifery
Look out for research article on midwives experiences of using the maternity epilepsy toolkit later this year.
Medicines taken during pregnancy: please report suspected drug reaction, including in the baby or child, on a Yellow Card GOV.UK
'Picnic in the Park'
Join us with your families at 'Queen Elizabeth Olympic Park,Meadow off Essex Way (near Velodrome), London, E20 1DY, UK
Opportunity of getting to know other women with epilepsy. Please bring your own picnic. Further details and booking click: Epilepsy Action
Look forward to meeting you all.
16 June 18
Cannabis treatment for epilepsy. Is there enough evidence of efficacy?
7 June 2018
Pharmacovigilance Risk Assessment Committee (PRAC) assessment report for valproate.
AntiEpileptic drug Monitoring in PREgancy: a double-blind randomised trial on effectiveness and acceptability of monitoring strategies.
14-20 May 2018
27 April 2018
Taking valproate during pregnancy is a serious risk: An update on practice implications:
Jonathan Sher. Click:
24th April 18
Valproate and developmental disorders GOV.UK Click: Drug safety alert
26th March 18
Purple Day for Epilepsy
Do get involved, click:
23rd March 18
Latest recommendations from European Medicines Agency New measures to avoid valproate exposure in pregnancy
9th February 18
PRAC recommends new measures to avoid valproate exposure in pregnancy. Click link and take survey on page 3 European Medicines Agency
5th January 18
Medscape Obs/Gynae & Women's Health. Click:
10th December 17
Maternity epilepsy shared care toolkit updated to include recommendations from MBBRACE-UK
8th December 17
Buccolam (buccal midazolam) brand.
Class 4 Medicines defect Information: Device warning.
7th December 17
MBRRACE-UK Report launch Click: Lay summary with recommendations for women with epilepsy
20th November 17
20 November 17
19th October 17
Valproate and foetal anticonvulsant syndrome discussed in parliament. Click: View the debate
25 September 17
Pharmacovigilance Risk Assessment Committee (PRAC) Public Hearing on valproate and related substances, European Medicines Agency. London. Watch the hearing: EMA Public Hearing
22 September 17
Many women still not aware of risks of taking valproate in pregnancy survey conducted by Epilepsy Society, Epilpsy Action and Young Epilepsy reveals:
18 August 17
Are you a girl or woman under the age of 50, with epilepsy? Please take part in this survey to find out how many women are aware of the risks around the epilepsy drug sodium valproate during pregnancy. The survey is being run by Epilepsy Society, Young Epilepsy and Epilepsy Action https://www.surveymonkey.co.uk/r/SVArisks Please fill in the survey and share with friends and family.
21 July 17
New: 'Join the big conversation' women with epilepsy Facebook support group. Click women with epilepsy
17th July 17
European Medicines Agency Public hearing on valproate risks when prescibed in pregnancy on 26th September 2017. Chance to have your voice heard. Do read Public Hearings Guidance before completing the Application form for participation Closing date 25/08/17: sorry expired now.
16 June 17
RCM launches epilepsy in pregnancy i-learn module for midwives.
Click: epilepsy i-learn module
20 April 17
New evidence in France of harm from epilepsy drug valproate
Click: BBC news
If you take valproate, please seek prompt support from your doctor whilst using effective contraception
4 April 2017
NHS Improvements Safety Alert Resources to support safe use of valproate MHRA Alert
22 March 17
Important information for girls and young women: sodium valproate and pregnancy. Click:
17 March 17
Two students invent a MediVest’ for people with epilepsy.
13 March 2017
EMA launches New Safety Review of prenatal valproate exposure Medscape
CEU Clinical Guidance Drug interactions with hormonal contraception
12 December 2016
New ILAE classification for seizures Medscape
16 November 2016
Development of a core outcome set for epilepsy in pregnancy Al Watter et al, 2016
Click: Professional page
7 November 2016
Cochrane review published click: Professional page
Weston et al (2016) Monotherapy treatment of epilepsy in pregnancy: congenital malformation outcomes in the child
31 October 2016
Women with epilepsy should be better informed about risks of sodium valproate in pregnancy
Some epilepsy medicines reduce the effectiveness of emergency contraception. Click
Emergency contraception leaflet for further information.
For further news & resources, click: Professional page
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Last updated 02/12/18