Women with epilepsy
Women with epilepsy

Designed for use before, during and following pregnany to help with decision making, choice, risk reduction strategies, safety measures and empowerment to become an equal partner in your epilepsy maternity healthcare.

This resource has been developed by an epilepsy specialist nurse/midwife from the experience of supporting women with epilepsy & healthcare professionals over the last 16 years. It showcases the latest evidence based research & guidelines & links with epilepsy & pregnancy support groups. It is regularly updated to reflect opinions of women with epilepsy & health professionals. Feedback gratefully received to enable continued development.

GOV.UK alert: women taking sodium valproate or valproic acid. The brand names are Epilim, Epilim Chrono, Epilim Chronosphere, Episenta, Epival, Depakote and Convulex. Click Valproate patient guide. 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 why women with epilepsy are advised to plan pregnancy, on this page.

Preconception advice to prepare for pregnancy & beyond

Support

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. 

Choice

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.

Decision making

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.  

Frequently asked questions

What is epilepsy?

 

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 occur 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 [1].

 

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 ActionEpilepsy Scotland and Epilepsy Foundation

Are all seizures due to epilepsy?

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 NEAD. 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 [2]

 

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 [3] 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.

Do many women with epilepsy have babies?

Yes; about 2,500 births occur annually to women with epilepsy in the UK. 

Should I be referred for preconception counselling?

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.

Why should I plan my pregnancy?

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 [6] 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 MHRA valproate guide for patients for further information if you are taking sodium valproate. Please note the brand names for sodium valproate and valproic acid are: Epilim, Epilim Chrono, Epilim Chronosphere, Episenta, Epival, Depakote and Convulex.

 

The UK Teratology information service website is a resource for medicines safety advice in pregnancy/breast feeding. Information includes advice about: sodium valproate, topiramate, gabapentin, carbamazepine, pregabalin, gabapentin and lamotrigine. Click: search engine for further details on the UKTIS website; please note their Terms and conditions and privacy policy as information may not necessarily be current. If you are unable to obtain accurate information, contact the UK Epilepsy & Pregnancy Register for accurate information about potential risk of your particular antiepileptic drug regime. 

Can I stop taking my AEDs

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.

Is contraception affected by my antiepileptic drugs?

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

Do I need to take folic acid?

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 [7]. 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 [8]. 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]. 

What can I do before pregnancy to reduce risks?

Please click on links for further advice and risk reduction strategies

  • Smoking can be associated with increased risks to you and your developing baby; do take advantage of the NHS support to quit smoking NHS advice
  • Achieve a normal weight and adopt a healthy lifestyle NHS Pre-conception care
  • Stop drinking alcohol and seek advice from your GP about other prescribed and unprescribed medicines/substances used. NHS Support to quit alcohol
  • Seek advice from your GP if you have mental health problems or any other health condition that may deteriorate during pregnancy.  Mental health problems in pregnancy
  • Inform the DVLA if you have a seizure/if you are doing an AED change DVLA epilepsy and driving 
  • Take control of your epilepsy through increasing your knowledge by learning as much about it as possible. Epilepsy Action Epilepsy Society Epilepsy Research.
  • Encourage your family and wider support network to increase their knowledge Epilepsy Action Advice for seizure management.  
  • Become an expert in managing your condition through Epilepsy Action self management advice:  includes care plan advice, epilepsy and well-being, epilepsy and you and this maternity toolkit.
  • Keep a seizure diary and if possible and safe to do so, ask a family member to video one of your seizures. This helps specialists classify your seizure type, guide your treatment and advise you about safety. Epilepsy Society seizure diary advice  Epilepsy Action Keeping a seizure diary
  • Wear an alert bracelet or ID jewellery. Lots of great designs available; please look up on your search engine.
  • Reduce your risks SUDEP Action Epilepsy self-monitor Epilepsy Society: Risk assessment advice
  • Always take extreme caution around water: showering instead of bathing when alone or when no one is around to ensure your well-being; the same applies to a jacuzzi or Hot Tub. Always ensure a pool lifeguard is aware of your epilepsy and swim with a buddy. Avoid being close to any water's edge alone.
  • Ask your GP for a full blood screen including: Full blood count, Liver, renal, bone and thyroid function. A vitamin D level and ferratin level. If you take antiepileptic drugs, a baseline preconception serum level can provide guidance if your specialist team and you would like a combination of clinical and therapeutic drug monitoring in pregnancy.
  • Improve your preconception health Emma's Diary Getting pregnant & having a baby
  • Evidence based resources for expectant parents www.babycentre.co.uk
  • Important for women to optimise their bone health: AEDs and Osteoporosis PDF

 

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

 

National Guidelines

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 (2016) 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 at Hampshire Hospitals Foundation Trust, Florence Portal House, Royal Hampshire County Hospital, Romsey Road, Winchester, SO22 5DG. Further information contact: kim.morley@nhs.net 

 

 

For the latest news click on: Professional page   Visitor counter added on 19/08/16

Pregnant women with epilepsy-a maternity[...]
Adobe Acrobat document [933.5 KB]

PDF Free to download: peer reviewed maternity epilepsy

toolkit above. Designed to assist history taking; reduce risk, increase knowledge and awareness and provide a summary of management in pregnancy. For further information click on Professional page 

 

This toolkit has been incorporated into the new RCM i-learn epilepsy in pregnancy module.

Click: RCM i-learn

 

Founder of website:

Kim Morley, Epilepsy Specialist Nurse/Midwife Practitioner.

RCM National & Regional Award Winner, 'Mum's Midwife of the Year,' 2016.

Based at: Royal Hampshire County Hospital, Winchester. Hampshire. SO22 5DG

email: kim.morley@nhs.net  

Appts, Tel: 01962824210

 

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.

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:

Medicines For Children

17 March 17

Two students invent a MediVest’ for people with epilepsy. 

Epilepsy vest award

13 March 2017

EMA launches New Safety Review of prenatal valproate exposure Medscape

January 2017

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

Epilepsy Action survey. See Professional page news update for further advice.

September 2016

Some epilepsy medicines reduce the effectiveness of emergency contraception. Click 

Emergency contraception leaflet for further information.

 

For further news & resources, click: Professional page

 

Please note this website is under regular development and will be converted to easy to read click-on icons, shortly. If you would like anything added  contact kim.morley@nhs.net

 

Last updated 19/06/17

Print Print | Sitemap
© Kim Morley Please reference publication material used from this site.