This Guidelines summary covers diagnosing, treating, and managing epilepsy and seizures in children, young people, and adults in primary care, including when to refer for specialist review, management of prolonged or repeated seizures, review and referral, and special considerations for family planning for women with epilepsy. It offers best-practice advice on managing epilepsy to improve health outcomes so that people with epilepsy can fully participate in daily life.
This summary covers the key priorities for implementation. Refer to the full guideline for the complete set of recommendations.
Medicines and Healthcare products Regulatory Agency (MHRA) advice on antiepileptic drugs in pregnancy: In May 2021, NICE reviewed and amended recommendations on carbamazepine, gabapentin, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital, phenytoin, pregabalin, topiramate, and zonisamide in line with MHRA updated safety advice on antiepileptic drugs in pregnancy.
MHRA advice on valproate: NICE has amended recommendations in line with the MHRA guidance on valproate use by women and girls. Valproate must not be used in women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), unless other options are unsuitable and the pregnancy prevention programme is in place. The MHRA has published temporary advice on the valproate pregnancy prevention programme during the COVID-19 pandemic.
Because of a risk of abuse and dependence, gabapentin and pregabalin are controlled under the Misuse of Drugs Act 1971 as class C substances and scheduled under the Misuse of Drugs Regulations 2001 as schedule 3 (as of 1 April 2019). See update information for details.
View this summary online at guidelines.co.uk/234875.article
Outline care algorithms
Algorithm 1: Outline care algorithm—adults
Algorithm 2: Outline care algorithm—children
Box 1: Links to NICE guidance
- All children, young people, and adults with a recent-onset suspected seizure should be seen urgently[A] by a specialist.[B] This is to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs.
- Healthcare professionals should adopt a consulting style that enables the child, young person, or adult with epilepsy, and their family and/or carers as appropriate, to participate as partners in all decisions about their healthcare, and take fully into account their race, culture, and any specific needs
- All children, young people, and adults with epilepsy should have a comprehensive care plan that is agreed between the person, their family, and/or carers as appropriate, and primary and secondary care providers
- The anti-epileptic drug (AED) treatment strategy should be individualised according to the seizure type, epilepsy syndrome, co-medication and co-morbidity; the child, young person, or adult's lifestyle; and the preferences of the person, their family, and/or carers as appropriate.
Prolonged or repeated seizures and convulsive status epilepticus
- Only prescribe buccal midazolam or rectal diazepam for use in the community for children, young people, and adults who have had a previous episode of prolonged or serial convulsive seizures[C]
- Administer buccal midazolam as first-line treatment in children, young people, and adults with prolonged or repeated seizures in the community. Administer rectal diazepam if preferred or if buccal midazolam is not available.[C] If intravenous access is already established and resuscitation facilities are available, administer intravenous lorazepam.
Special considerations for women and girls of childbearing potential
- Women and girls with epilepsy and their partners, as appropriate, must be given accurate information and counselling about contraception, conception, pregnancy, caring for children, breastfeeding, and menopause
- Discuss with women and girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), and their parents and/or carers if appropriate, the risk of AEDs causing malformations and possible neurodevelopmental impairments in an unborn child. Assess the risks and benefits of treatment with individual drugs. Note that there are limited data and important uncertainties about risks to the unborn child, particularly with newer drugs. Follow the MHRA safety advice on antiepileptic drugs in pregnancy. Specifically discuss the risk of continued use of sodium valproate to the unborn child, being aware that higher doses of sodium valproate (more than 800 mg/day) and polytherapy, particularly with sodium valproate, are associated with greater risk. Follow the MHRA safety advice on valproate use by women and girls.
Review and referral
- All children, young people, and adults with epilepsy should have a regular structured review. In children and young people, this review should be carried out at least yearly (but may be between 3 and 12 months by arrangement) by a specialist. In adults, this review should be carried out at least yearly by either a generalist or specialist, depending on how well the epilepsy is controlled and/or the presence of specific lifestyle issues
- At the review, children, young people, and adults should have access to: written and visual information; counselling services; information about voluntary organisations; epilepsy specialist nurses; timely and appropriate investigations; and referral to tertiary services, including surgery if appropriate
- If seizures are not controlled and/or there is diagnostic uncertainty or treatment failure, children, young people, and adults should be referred to tertiary services soon[D] for further assessment.
Valproate in children, young people, and adults
Summary of NICE guidance and safety advice
- Valproate[E] is licensed for use in epilepsy and bipolar disorder. It is also used off-label for depression, neuropathic pain, dementia, and migraine. It is associated with a significant risk of birth defects (including spina bifida and face and skull malformations) and developmental disorders in children born to women who take valproate during pregnancy
- Valproate interacts with a number of medicines, including other antiepileptic medicines, antipsychotics, and antibiotics. See the British National Formulary (BNF), BNF for Children, and relevant summary of product characteristics (SPCs) for more details. See also, the MHRA drug safety update Carbapenems: concomitant use with valproic acid not recommended.
- NICE’s guideline on epilepsies has recommendations on using valproate for the following seizure types:
- focal seizures
- newly diagnosed generalised tonic–clonic (GTC) seizures
- absence seizures
- myoclonic seizures
- tonic or atonic seizures
- Dravet syndrome
- Lennox–Gastaut syndrome
- benign epilepsy with centrotemporal spikes, Panayiotopoulos syndrome or late-onset childhood occipital epilepsy (Gastaut type)
- idiopathic generalised epilepsy
- juvenile myoclonic epilepsy
- epilepsy with GTC seizures only
- childhood absence epilepsy, juvenile absence epilepsy or other absence epilepsy syndromes.
- NICE’s guideline on bipolar disorder has recommendations on using valproate to manage:
- mania or hypomania in adults in secondary care
- bipolar depression in adults in secondary care
- bipolar disorder in adults in the longer term in secondary care
- It also recommends that valproate should not be started in primary care to treat bipolar disorder:
Antenatal mental health
- NICE’s guideline on antenatal and postnatal mental health recommends that valproate should not be used for the acute or long-term treatment of a mental health problem in women or girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years), planning a pregnancy, pregnant or considering breastfeeding.
- NICE’s guideline on depression in adults recommends that valproate should not be used routinely with an antidepressant.
- NICE’s guideline on neuropathic pain in adults in non-specialist settings recommends that valproate should not be used unless advised by a specialist.
- NICE’s guideline on dementia recommends that valproate should not be used to manage agitation or aggression in people with dementia, unless indicated for another condition.
- NICE’s guideline on headaches in over 12s does not recommend valproate.
Women or girls of childbearing potential (including young girls who are likely to need treatment into their childbearing years)
- Do not prescribe valproate for any condition, unless other options are ineffective or not tolerated, and the Pregnancy Prevention Programme is in place. See the MHRA safety advice on valproate use by women and girls and temporary advice during the COVID-19 pandemic
- NICE’s guideline on bipolar disorder recommends:
- if a woman or girl of childbearing potential is already taking valproate, advise her to gradually stop the medicine because of the risk of fetal malformations and adverse neurodevelopmental outcomes after any exposure in pregnancy
- the dose of valproate should be reduced gradually over at least 4 weeks to minimise the risk of relapse
- The SPCs for valproate advise:
- valproate must be initiated and supervised by a specialist
- the benefits and risks of treatment should be carefully reconsidered at regular treatment reviews
- it should preferably be prescribed as monotherapy and at the lowest effective dose, if possible as a prolonged-release formulation
- the daily dose should be divided into at least two single doses
- Stopping valproate: no woman or girl should stop taking valproate without first discussing it with their doctor (MHRA safety advice).
Women or girls who are pregnant or planning pregnancy
- Valproate must not be used in pregnant women
- The Pregnancy Prevention Programme advises:
- women or girls who plan to become pregnant should be referred urgently to the specialist managing their condition. They should not stop contraception or valproate until advised to by their specialist
- women or girls with unplanned pregnancy should be urgently referred to a specialist and informed not to stop valproate before they are seen by the specialist
- The SPCs for valproate advise:
- all women or girls with valproate-exposed pregnancy, and their partners, should be referred to a specialist experienced in prenatal medicine for evaluation and counselling. See SPCs for details.
[A] The Guideline Development Group considered that 'urgently' meant being seen within 2 weeks
[B] For adults, a specialist is defined throughout as a medical practitioner with training and expertise in epilepsy. For children and young people, a specialist is defined throughout as a paediatrician with training and expertise in epilepsy.
[D] The Guideline Development Group considered that 'soon' meant being seen within 4 weeks
[E] ‘Valproate’ refers to 3 formulations of valproate available in the UK: sodium valproate, valproic acid, and valproate semisodium. Both valproate semisodium and sodium valproate are metabolised to valproic acid, which is the pharmacologically active component. The UK marketing authorisation for the 3 formulations of valproate differ depending on the individual product. At the time of publication (March 2019), licensed indications for valproate are the treatment of epilepsy, and the treatment of acute mania and for continuation treatment in people who have had mania that has responded to treatment with valproate. See the individual SPCs for further information
[F] Follow Driver and Vehicle Licensing Agency guidance on epilepsy and driving and MHRA advice on antiepileptic drugs: switching between different manufacturers’ products
NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication.
Published date: 11 January 2012.
Last updated: 12 May 2021.