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16/06/21 Letter to women and girls taking sodium valproate with information re safety, contraception & pregnancy NHS England. If valproate is stopped without receiving specialist advice, seizure control may change and uncontrolled seizures can increase the risks of accidents, injuries and seizure related deaths. Further information Epilepsy Action Epilepsy Society SUDEP Action

03/05/21 Are you part of a UK professional team offering support to women during pregnancy? Please take part in the National Mapping Survey of Epilepsy in Pregnancy

7/01/21 Safety review of epilepsy medicines in pregnancy - women who may become pregnant urged to discuss treatment options with their doctor GOV.UK. Click GOV.UK for latest safety leaflet on epilepsy medicines and pregnancy to help patients and their families understand the risks.

6/05/20 Click: GOV.UK for the latest temporary advice during coronavirus (COVID-19) about valproate use by women and girls. It is important all girls & women taking valproate receive specialist review of their medication & for a Pregnancy Prevention Plan to be in place if they are continuing this drug in child-bearing years.

It is advisable that you receive support during the child-bearing years. It is important not to stop your epilepsy medication 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 epilepsy medication 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.  

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 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 [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 Action, Epilepsy Scotland 

Learn more about epilepsy Epilepsy Action Epilepsy and You and for younger girls click: Me and My epilepsy: Muir Maxwell Epilepsy Centre

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 [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.

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

The majority of women treated with epilepsy medications have good seizure control. However, it is important the GP refers you to a specialist if your epilepsy diagnosis & 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 epilepsy medicine; 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 epilepsy medication. If you do not meet any of these criteria, you can still ask for an expert opinion. The specialist will provide advice to enable you to make a shared informed decision about your future epilepsy management in preparation of pregnancy & 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. Epilepsy medications 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 epilepsy medications prescribed; the dosage, family history of congenital malformations and other conditions such as thyroid disease and diabetes. A safety leaflet on epilepsy medicines and pregnancy to help patients and their families understand the risks, click GOV.UK

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 GOV.UK Patient valproate booklet for further information if you are taking this medicine. The other 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 Click: GOV.UK for temporary advice during coronavirus (COVID-19) about the valproate pregnancy prevention programme. 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

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 epilepsy medication regime. 

Do not suddenly stop your epilepsy medication without seeking urgent medical advice from your GP/epilepsy specialist.  Suddenly stopping epilepsy medication can be associated with uncontrolled seizures resulting in serious harm and in rare cases, sudden unexpected death.

Some epilepsy medications 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 epilepsy medication 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 epilepsy medication regime. There is data that folic acid taken in pregnancy may reduce the risk of a child having autism in women taking epilepsy medications 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]. 

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 epilepsy medication 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 epilepsy medication, 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: Epilepsy medications 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 (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.

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