Previous changes

March 2025 — reviewed. A literature search was conducted in January 2025 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of this topic. The topic has been updated in line with current literature including the National Institute for Health and Care Excellence (NICE) guideline Epilepsies in children, young people and adults (NICE 2025). The term 'antiepileptic drug' has been changed to 'antiseizure medication'. The definition section has been expanded. The recommendations about reproductive health advice have been expanded to include men on antiseizure medication who are sexually active. The topic has undergone minor restructuring to improve clarity and navigation.

November 2024 — minor update. Clarification of use of copper intrauterine devices to be preferred for women of childbearing age receiving enzyme-inducing antiepileptic drugs.

September 2024 — minor update. A new section about contraceptive advice to give men with epilepsy has been added in line with the Medicines and Healthcare products Regulatory Agency (MHRA) Drug Safety Update (2024) Valproate use in men: as a precaution, men and their partners should use effective contraception. 

August 2024 — minor update. Broken links updated to MHRA information on topiramate in pregnancy. 

June 2024 — minor update. Information that topiramate is now contraindicated in pregnancy and in women of childbearing potential unless the conditions of a Pregnancy Prevention Programme are fulfilled has been added, in line with the MHRA Drug Safety (2024) Update Topiramate (Topamax): introduction of new safety measures, including a Pregnancy Prevention Programme.

January 2024 — minor update. Replaced the quality statements to align with the new quality standard published by the National Institute for Health and Care Excellence Epilepsies in children, young people and adults Quality standard [QS211]. Information about the availability of MHRA safety and educational materials to reduce the risk of harm from valproate has been added to this topic.

May 2023 — minor update. Minor text changes made to the information that valproate should not be used in women or girls of childbearing age.

February 2023 — minor update. Added further information about valproate in pregnancy and a link to the Diagnosis and management of individuals with Fetal Valproate Spectrum Disorder; a consensus statement from the European Reference Network for Congenital Malformations and Intellectual Disability in the Women of childbearing age Scenario. 

April 2022 — minor update. Relevant sections of this topic have been updated to align with the National Institute for Health and Care Excellence (NICE) guideline (2022) Epilepsies in children, young people and adults.

May 2021 — minor update. A recommendation to urgently refer women for specialist advice if they are taking antiepileptic drugs and planning to become pregnant has been added to this topic in line with the Medicines and Healthcare products Agency (MHRA) Drug Safety Update Antiepileptic drugs in pregnancy: updated advice following comprehensive safety review.

March 2021 — minor update. Adverse effects of antiepileptic drugs updated to contain information on severe liver damage in children.

January 2021 — minor update. The safety profile of valproate in children has been updated in line with the revised manufacturers' Summary of Product Characteristics.

November 2020 — minor update. A typographical error has been corrected.

August 2020 — minor update. Adverse effects of antiepileptic drugs updated to contain information on exacerbation of seizures.

April 2020 — minor update. The text in the definition of epilepsy has been clarified. 

February 2020 — minor update. Recommendations about discussing the risk of antiepileptic drugs causing malformations and possible neurodevelopmental impairments in an unborn child, and to specifically discuss the risk of continued use of sodium valproate to the unborn child with women and girls of childbearing potential have been added to this topic in line with the updated NICE guideline Epilepsies: diagnosis and management. 

June to July 2019 — reviewed. A literature search was conducted in April 2019 to identify evidence-based guidelines, UK policy, systematic reviews, and key RCTs published since the last revision of this topic. No major changes to the recommendations have been made. The text on valproate has been changed to reflect the Medicines and Healthcare products Regulatory Agency (2018) advice regarding the use of valproate medicines in women and girls of childbearing potential. There have also been minor changes to the sections on assessment, management of a first seizure, contraception, and pregnancy. Links to sources of patient information and support have been added where applicable.

May 2018 — minor update. New product availability for brivaracetam oral solution and tablets have been approved as monotherapy or adjunctive therapy for partial-onset (focal) seizures in people aged four years and over.

April 2018 — minor update. Information added to adverse effects regarding lamotrigine causing hemophagocytic lymphohistiocytosis.

March 2018 — minor update. Information added to adverse effects relating to prescribing semisodium valproate to people with an underlying carnitine palmitoyltransferase type II deficiency.

September 2017 — minor update. Information added on laboratory tests in the adverse effects Prescribing information section.

September 2017 — minor update. Information added about cardiovascular adverse effects for phenytoin, in line with updates to the manufacturers' Summary of Product Characteristics (SPC).

December 2016 — minor update. The section on adverse effects of antiepileptic drugs has been updated with the information that macular abnormality with features of vitelliform maculopathy occurs in some people taking retigabine. Information on worsening of convulsions has also been added. Stevens–Johnson syndrome, toxic epidermal necrolysis, and drug reaction with eosinophilia and systemic symptoms (DRESS) have been added as possible adverse effects of lamotrigine. 

November 2016 — minor update. A Medicines and Healthcare products Regulatory Agency (MHRA) Drug Safety Update Valproate and risk of abnormal pregnancy outcomes: new communication materials recommendation to use new support tools to support discussion about the risks of valporate in pregnancy has been added to this topic.

June 2015 — minor update. Nightmares added as an adverse effect of lamotrigine based on an update to the manufacturer's Summary of Product Characteristics (SPC).

October to December 2014 — reviewed. A literature search was conducted in October 2014 to identify evidence-based guidelines, UK policy, systematic reviews, and key RCTs published since the last revision of this topic. The management sections have been restructured. No major changes to the recommendations have been made, which are in line with the National Institute for Health and Clinical Excellence (NICE) guideline (2012) The epilepsies. The diagnosis and management of the epilepsies in adults and children in primary and secondary care, and a subsequent Evidence update of the NICE guideline The epilepsies (2014).

May 2014 — minor update. The word prescriptions has been removed from the 'How up to date is this topic?' section.

December 2013 — minor update. A broken link to appendix G in the NICE guidance has been removed.

November 2013 — minor update. Text updated in line with the Medicines and Healthcare products Regulatory Agency (MHRA) Drug Safety Update regarding switching between manufacturers' products of antiepileptic drugs, including switching between branded and generic products, and between different generic products of a particular antiepileptic drug.

July 2013 — minor update. Links to the DVLA website have been updated.

June 2013 — minor update. The 2013 QOF options for local implementation have been added to this topic.

August 2012 — minor update. Minor typographical error corrected.

April 2012 — minor update. The 2012/2013 QOF indicators have been added to this topic. 

February 2012 — minor update. Topic updated to reflect relevant changes to the new epilepsy guidance The Epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care issued by the National Institute for Health and Care Excellence. 

June 2011 — minor update. Evidence from a large cohort study on dose-dependent risk of malformations with antiepileptic drugs added to the section on contraception and pregnancy planning. Issued in June 2011.  The 2011/2012 QOF indicators have been added to this topic. 

February 2011 — topic structure revised to ensure consistency across CKS topics — no changes to clinical recommendations have been made.

February to June 2009 — converted from CKS guidance to CKS topic structure. The evidence-base has been reviewed in detail, and recommendations are more clearly justified and transparently linked to the supporting evidence. There have been no major changes to the recommendations.

May 2009 — minor update. The section GMS audit criteria in the Goals and outcome measures section has been renamed QOF indicators. 

February 2009 — minor update. Drug safety advice from the MHRA (Medicines and Healthcare products Regulatory Agency) that all antiepileptic drug treatment is associated with a small risk of suicidal thoughts and behaviour. 

July to September 2005 — reviewed. Validated in December 2005. Issued in February 2006.

May 2008 — updated to add new drug safety advice from the MHRA (Medicines and Healthcare products Regulatory Agency) on genetic testing for certain ethnic groups before starting carbamazepine, to reduce the risk of carbamazepine-induced Stevens-Johnson syndrome. 

December 2007 — updated to add new drug safety advice from the MHRA (Medicines and Healthcare products Regulatory Agency) on the interaction between St John's wort and all antiepileptic drugs. 

July 2005 — updated to incorporate Referral guidelines for suspected cancer published by NICE.

August 2004 — updated to incorporate NICE technology appraisal number 79, Newer drugs for epilepsy in children, and number 76, Newer drugs for epilepsy in adults. Validated in September 2004 and issued in November 2004.

June 2003 — reviewed. Validated in September 2003 and issued in October 2003.

October 2000 — updated to incorporate the Department of Health Referral Guidelines for Suspected Brain Tumour. Validated in November 2000 and issued in December 2000.

July 1999 — written. Validated in October 1999 and issued in January 2000.

New evidence

Evidence-based guidelines

• HIS (2026) Epilepsies in children and young people: investigative procedures and management. Healthcare Improvement Scotland. https://www.sign.ac.uk [Free-Full text]

HTAs (Health Technology Assessments)

• NICE (2025) Cenobamate for treating focal onset seizures in epilepsy. National Institute for Health and Care Excellence. [Free Full-text]

Economic appraisals

No new economic appraisals relevant to England since 1 January 2025.

Systematic reviews and meta-analyses

No new systematic reviews or meta-analysis which reach the CKS threshold for inclusion since 1 January 2025.

Primary evidence

No new primary evidence which reaches the CKS threshold for inclusion published since 1 January 2025.

New policies

No new national policies or guidelines since 1 January 2025.

New safety alerts

No new safety alerts since 1 January 2025.

Changes in product availability

No changes in product availability since 1 January 2025.

Basis for recommendation

The recommendations on assessment are based on the National Institute for Health and Care Excellence (NICE) guideline Epilepsies in children, young people and adults [NICE, 2025], the Scottish Intercollegiate Guidelines Network (SIGN) guideline Diagnosis and management of epilepsy in adults [SIGN, 2018], the International League Against Epilepsy (ILAE) position paper Operational classification of seizure types by the International League Against Epilepsy [Fisher, 2017], the ILAE position statement ILAE definition of the idiopathic generalized epilepsy syndromes [Hirsch, 2022], and the ILAE position statement International League Against Epilepsy classification and definition of epilepsy syndromes with onset at a variable age [Riney, 2022], and expert opinion in review articles on epilepsy New-onset seizure in adults and adolescents: A review [Gavvala, 2016], Epilepsy [Kaarkuzhali, 2016], Counselling adults who experience a first seizure [Legg, 2017], Epilepsy in adults [Thijs, 2019] and Epilepsy: treatment options [Liu, 2017].

Clinical features on history-taking

• The recommendation to include first-hand witness accounts and video footage of the seizure, if available, is based on the NICE guideline committee decision that these potentially increase the accuracy of specialist clinical diagnosis of epilepsy [NICE, 2025]. This approach is supported by the SIGN guideline, which states that states that 'a clear history from the patient and an eyewitness to the attack give the most important diagnostic information, and should be the mainstay of diagnosis' [SIGN, 2018]. Expert opinion in a review article also notes that in many cases, the patient has impaired awareness during the event and witness accounts are crucial [Gavvala, 2016].
• The recommendation to ask about what happened before, during, and after the event and possible clinical features which can differentiate seizure type is based on the NICE guideline [NICE, 2025], the SIGN guideline [SIGN, 2018], the ILAE position paper [Fisher, 2017], and expert opinion in review articles [Gavvala, 2016; Kaarkuzhali, 2016; Liu, 2017].
  • A careful patient history and physical examination, together with specialist investigations, are needed to differentiate people with acute symptomatic seizures, single unprovoked seizures, and non-epileptic events from those with new-onset epilepsy. The diagnosis of an epileptic seizure or epilepsy is largely based on clinical history [Gavvala, 2016].
  • The SIGN guideline notes it is important to try to identify the type of seizure or epilepsy syndrome, as this guides specialist decisions about if and when to start antiseizure medication and which medication to use first-line [SIGN, 2018].
  • CKS acknowledges that the diagnosis of epilepsy may be complex and beyond the scope of healthcare practitioners in primary care, but the provision of a detailed history can help specialist diagnosis following referral.
• The recommendation to ask about potential provoking factors is based on the NICE guideline [NICE, 2025], and the SIGN guideline [SIGN, 2018].
  • Provoked seizures may be caused by drug misuse (such as alcohol, heroin, cocaine, methadone, amphetamine, ecstasy). The risk of recurrence of provoked seizures can be reduced by stopping or withdrawal of the trigger factor [SIGN, 2018].
• The recommendation to ask about any sustained injuries is extrapolated from the NICE guideline [NICE, 2025].
• The recommendation to ask about the post-ictal period is based on expert opinion in review articles [Kaarkuzhali, 2016; Liu, 2017].
• The recommendation to ask about any possible previous unrecognized seizures is based on the SIGN guideline which notes that a person presenting with a generalised tonic-clonic seizure may have previously unrecognised epilepsy, and may have had previous undiagnosed myoclonic, absence, or focal seizures [SIGN, 2018]. Similarly, expert opinion in a review article notes that a person presenting with a first generalised tonic–clonic seizure may have been experiencing more subtle, stereotypic events consistent with seizure for some time before presentation to a healthcare professional [Legg, 2017].
• The recommendation to assess for clinical features suggesting an alternative diagnosis is extrapolated from the SIGN guideline [SIGN, 2018].
• The recommendation to ask about the emotional impact of a first seizure is based on expert opinion in a review article, which highlights that providing adequate time for the person to tell their story and express their concerns can further promote respect and trust, and enables the opportunity to articulate the emotional aspects of this event [Legg, 2017].
• The recommendation to ask about risk factors for epilepsy and epilepsy-related death is based on the NICE guideline [NICE, 2025].
• The recommendation to ask about associated comorbidities and medications is based on the NICE guideline [NICE, 2025], the SIGN guideline [SIGN, 2018], and expert opinion in a review article [Legg, 2017].
  • The NICE guideline notes that exploring neurodevelopmental and cognitive function, mental health, social and emotional wellbeing is important as there may be associated conditions which need additional support and management. In addition, they may affect the specialist choice of antiseizure medication, especially in older people, due to the risk of adverse effects and potential drug interactions [NICE, 2025].
  • The SIGN guideline highlights that psychiatric comorbidities in people with epilepsy are common but may go undiagnosed and untreated. It also notes that both prescription and recreational drugs can occasionally precipitate seizures, particularly in people with epilepsy [SIGN, 2018].
  • Expert opinion in a review article notes that comorbidities are increasingly recognized as important aetiological and prognostic markers in the management of epilepsy [Thijs, 2019].
• The recommendation to ask about social situation is based on the NICE guideline and the SIGN guideline [SIGN, 2018].
• The recommendation to ask about any family history of epilepsy or seizures is based on the SIGN guideline [SIGN, 2018] and the ILAE position statement, which notes that although a family history of epilepsy associated with generalized seizures is supportive, it is most common for people with idiopathic generalised epilepsy not to have a family history of epilepsy [Hirsch, 2022].

Clinical features on examination

• These recommendations are based on the NICE guideline [NICE, 2025], the SIGN guideline [SIGN, 2018], and expert opinion in review articles [Gavvala, 2016; Kaarkuzhali, 2016]. They are also pragmatic, based on what CKS considers to be good clinical practice.
  • The NICE guideline notes that the risk of epilepsy-related death is increased and recommends early specialist treatment after a first unprovoked seizure, if the person has a neurological deficit on examination.

Arranging baseline blood tests and 12-lead ECG

• The NICE guideline committee agreed, based on their knowledge and experience, that assessment of metabolic disturbances, such as hypoglycaemia, can help to exclude alternative causes of a first seizure [NICE, 2025]. Expert opinion in various review articles also recommend baseline blood tests in the investigation of first seizure [Gavvala, 2016; Kaarkuzhali, 2016; Liu, 2017].
• A positive electrocardiogram (ECG) can identify cardiac causes of seizure-like symptoms, and a negative ECG can support a further investigation of suspected epilepsy [NICE, 2025]. The SIGN guideline also states that an ECG should be carried out in the assessment of all people with altered consciousness [SIGN, 2018]. This is supported by expert opinion in a review article [Kaarkuzhali, 2016].

Basis for recommendation

The information about differential diagnosis is based on expert opinion in the National Institute for Health and Care Excellence (NICE) guideline Epilepsies in children, young people and adults [NICE, 2025], the Scottish Intercollegiate Guidelines Network (SIGN) guideline Diagnosis and management of epilepsy in adults [SIGN, 2018], the International League Against Epilepsy (ILAE) position statement International League Against Epilepsy classification and definition of epilepsy syndromes with onset at a variable age [Riney, 2022], and expert opinion in review articles on epilepsy New-onset seizure in adults and adolescents: A review [Gavvala, 2016], Epilepsy [Kaarkuzhali, 2016], Counselling adults who experience a first seizure [Legg, 2017], Epilepsy in adults [Thijs, 2019], Epilepsy in older persons [Toniolo, 2022] and on epilepsy treatment [Liu, 2017]. It is also pragmatic, based on what CKS considers to be good clinical practice.

• The SIGN guideline notes that prompt and accurate differentiation of status epilepticus from pseudo-status epilepticus and other non-epileptic disorders is essential to avoid inappropriate treatment and iatrogenic morbidity [SIGN, 2018].

How should I manage a person with suspected epilepsy?

If a person presents with suspected epilepsy following initial assessment:

• Urgently refer all people suspected of having a first seizure for a specialist assessment (for an appointment within 2 weeks).
  • Refer adults to a clinician with expertise in assessing first seizures and diagnosing epilepsy.
  • Refer children and young people to a paediatrician with expertise in assessing first seizures and diagnosing epilepsy.
    • The referral letter should include a detailed description of the seizure from a first-hand witness (if available).
    • Advise the person to take a first-hand witness of the seizure to the first hospital appointment, if possible.
• Advise the person with suspected epilepsy and relatives/carers, if appropriate, about safety measures, potential triggers, and when to seek medical review. 
  • Avoid potentially dangerous activities whilst awaiting specialist assessment:
    • Stop driving immediately until they have seen an epilepsy specialist and inform the Driver and Vehicle Licensing Agency (DVLA). See the DVLA document Assessing fitness to drive: a guide for medical professionals for more information.
    • Avoid working with heavy machinery, at heights, or unsupervised swimming, and advise to shower rather than take a bath.
  • Advise about potential triggers that may lower the seizure threshold and make recurrence more likely, such as sleep deprivation, stress, photosensitivity, or alcohol/recreational drug use.
  • Advise who to contact if they have a further seizure whilst awaiting specialist assessment. Seek urgent specialist advice if there is concern about recurrent episodes of suspected seizures. 
• After a first seizure, give the person and relatives/carers, if appropriate, information about recognizing and managing a future seizure.
  • Advise to record any further episodes of possible seizures, for example, using a mobile phone video recording (ensuring prior informed consent is obtained).
  • Advise about first aid, initial safety measures, and when to call an ambulance in case of another seizure. The Epilepsy Action web information First aid for seizures may be helpful.
• Advise about additional sources of information and support for people with epilepsy and their relatives/carers. See the section on Routine epilepsy review for more information.

How should I manage a person having an epileptic seizure?

Ensure that friends, relatives, and/or work colleagues are aware of what to do if a person with epilepsy has a future seizure. An individualized emergency management plan may be provided by a specialist to prevent status epilepticus in people with repeated or prolonged seizures.

• If a person is having a seizure (particularly tonic-clonic), note the time, and if it lasts less than 5 minutes:
  • Look for an epilepsy identity card or jewellery.
  • Protect the person from injury by:
    • Cushioning their head, for example, with a pillow.
    • Loosening tight clothing.
    • Removing harmful objects from nearby.
  • Do not restrain the person or put anything in their mouth.
  • When the seizure stops, check the airway and place them in the recovery position.
  • Stay with them until they have recovered.
  • Examine for, and manage any injuries.
  • Call 999 if it is their first seizure; a seizure recurs shortly after the first one, the person is seriously injured; there is difficulty breathing after the seizure has stopped, or the person remains unrousable.
  • The Epilepsy Action web information First aid for seizures may be helpful.
• If a person has generalised convulsive status epilepticus, or repeated or cluster seizures (typically 3 or more self-terminating seizures in 24 hours), or prolonged seizures (continuing for 2 minutes longer than the person's usual seizure):
  • Secure the airway and give oxygen (if available) and assess cardiac and respiratory function.
  • Give immediate emergency treatment as detailed in the person's individualized emergency management plan if immediately available. If this is not available:
    • Give buccal midazolam (10 mg in adults and children over 10 years of age; 7.5 mg in children aged 5–9 years; 5 mg for children aged 1–4 years [off-label indication for oromucosal solution]) or rectal diazepam (10–20 mg in adults and children over 12 years of age; 5–10 mg in children aged 2–11 years) immediately for convulsive status epilepticus.
    • Consider giving buccal midazolam immediately for repeated or cluster seizures or prolonged seizures.
  • Call 999 if seizures do not respond promptly to the first dose of benzodiazepine in the community.
    • Follow the person's individualized emergency management plan if this is immediately available, or give a second dose of benzodiazepine if the seizure does not stop within 5–10 minutes of the first dose.
  • Call 999 if seizures do respond to treatment but:
    • Seizures were prolonged or recurrent before treatment was given, particularly if seizures had developed into status epilepticus.
    • There is a high risk of recurrence, such as a history of repeated seizures or status epilepticus.
    • There are difficulties monitoring the person's condition.
    • This is their first seizure.
• After an episode of convulsive status epilepticus, repeated or cluster seizures, or prolonged seizures, arrange for specialist review to agree an individualized emergency management plan if the person does not already have one and there is concern that status epilepticus, repeated or cluster seizures, or prolonged seizures may recur. See the section on Specialist advice or re-referral for more information.

How should I review a person with confirmed epilepsy?

If a person has a confirmed diagnosis of epilepsy following specialist referral, ensure the person is reviewed at least annually in primary care.

• Encourage people with epilepsy to attend planned reviews and ensure that:
  
  • All children and young people have a specialist monitoring review at least annually.
  • All adults with complex epilepsy, complex treatment regimens, or significant comorbidities have a specialist monitoring review at least annually. The frequency of review of other people with epilepsy should be decided by the specialist team.
  • All people with epilepsy have access to an epilepsy specialist nurse who can provide information, education, support, and a point of contact for the person and their relatives/carers.
• Review the person's seizure control and adherence to antiseizure medication.
  • Ask about seizure frequency, type(s), severity, date of last seizure, and any changes since their last review. See the section on Specialist advice or re-referral if seizures are uncontrolled or there is seizure recurrence after a period of remission.
  • Ask about the dose, adverse effects, and adherence to antiseizure medication.
    
    • Ensure the person and relatives/carers understand the importance of taking antiseizure medication regularly to reduce the risk of seizures and sudden unexplained death in epilepsy (SUDEP).
    • Advise to seek urgent medical attention if there are symptoms such as rash, bruising, or drowsiness with vomiting, especially in the first few weeks of treatment. See the section on Adverse effects in Prescribing information for more information.
    • When prescribing specialist antiseizure medication, be aware when to prescribe a specific manufacturer's product by brand name or when to use the generic drug name. See the section on Prescribing issues in Prescribing information for more information. Avoid routine switching between different manufacturers of antiseizure medication.
    • Do not arrange routine blood monitoring of antiseizure medication in primary care.
• Ask about the impact of epilepsy on the person's functioning and daily activities.
  • Ask about provoking factors for seizures such as sleep deprivation, stress, photosensitivity, alcohol or recreational drug use, and reduce or avoid these where possible.
  • Ask about possible risks of any ongoing seizures and manage where possible any modifiable risk factors for epilepsy-related injury and death including SUDEP.
    • Advise about safety measures such as showering rather than bathing, cooking safely, caring for young children, high-risk activities such as unsupervised swimming, scuba diving, free climbing, or working at heights or with heavy machinery.
    • A parent or carer may wish to supervise or use a night monitor for people with epilepsy who have seizures during sleep and have been assessed to be at higher risk of epilepsy-related death.
  • Assess the person's emotional wellbeing and mental health, including anxiety, depression, and cognitive function, and offer support and management. See the CKS topics on Generalized anxiety disorder, Depression, and Depression in children for more information.
  • Ask about the impact of epilepsy on work, education, sport, leisure, and social activities, and encourage the person to maintain normal activities where possible.
  • Review the person's driving status and advise about current Driver and Vehicle Licensing Agency (DVLA) regulations. See the DVLA publication Assessing fitness to drive: a guide for medical professionals for more information.
• Provide advice on sources of information and support for the person and relatives/carers, such as:
  • Epilepsy Action (website www.epilepsy.org.uk) provides an advice helpline, online and in-person group support, and patient information about various aspects of living with epilepsy, including driving, sex and contraception, young adults, education, safety advice, and work.
  • The Epilepsy Society (website www.epilepsysociety.org.uk) provides awareness campaigns, funds research, advocates for people living with epilepsy, and provides lots of patient information including leaflets about work, safety and risk, driving, benefits, pregnancy, young people, and mental health.
  • The NHS (website www.nhs.uk) patient information Living with epilepsy.
  • SUDEP Action (website www.sudep.org) is an organisation for relatives of people who have died from epilepsy. They offer information on risks of epilepsy, offer support when someone has died, sponsor research and education to prevent further deaths, and capture data across the UK through the Epilepsy Deaths Register.
• Ensure that carers/relatives of a person with epilepsy are aware about emergency seizure management.
  • Advise how to recognize and manage a seizure, including first aid measures; when and how to give buccal midazolam or rectal diazepam for prolonged or recurrent seizures, if the person has an emergency management plan; and when to call an ambulance. See the section on Managing an epileptic seizure for more information.
    • The Epilepsy Action web information First aid for seizures may be helpful.
• Assess the person's risk of osteoporosis and vitamin D deficiency if on longterm treatment with antiseizure medications such as carbamazepine, phenytoin, primidone, and sodium valproate.
  • Consider vitamin D and calcium supplementation for people at risk. See the CKS topics on Osteoporosis - prevention of fragility fractures, Vitamin D deficiency in adults, and Vitamin D deficiency in children for more information.
• Provide advice about reproductive health, including contraception, pregnancy, pregnancy planning, and potential teratogenicity of antiseizure medication to women and girls of childbearing potential and men taking antiseizure medication who are sexually active. See the section on Scenario: Contraception, pregnancy, and planning pregnancy for more information.

When should I seek specialist advice or arrange re-referral?

• Consider seeking specialist advice or arrange re-referral to a specialist in epilepsy (if the person has been discharged from specialist follow-up) if a person has confirmed epilepsy and:
  • There is seizure recurrence after a period of remission — refer urgently for an appointment within 2 weeks.
  • Is a woman or girl planning pregnancy or is pregnant — referral urgently. See the section on Planning pregnancy or pregnant for more information.
  • The person has had an episode of convulsive status epilepticus, repeated or cluster seizures, or prolonged seizures in order to agree an individualized emergency management plan if there is not one in place and there is concern that status epilepticus may recur.
  • Seizures are drug-resistant, and/or antiseizure medication is not tolerated due to adverse effects.
  • There is an unexplained increase in seizure frequency.
  • There is unexplained rapid cognitive decline which may be secondary to epilepsy and/or antiseizure medication.
  • Is a man using sodium valproate who is planning a family within the next year. See the section on Contraception for men for more information.
  • The person has been seizure-free for at least 2 years and would like to consider tapering or withdrawing from antiseizure medication.
    
    • Factors influencing the decision may include the person's preferences, individualized risk of seizure recurrence and duration of seizure freedom, risk of injury or death including sudden unexplained death in epilepsy (SUDEP) with further seizures, implications for driving, employment, fear of further seizures, and concerns about longterm treatment.
    • See the DVLA publication Assessing fitness to drive: a guide for medical professionals for information about entitlement to drive if withdrawing from antiseizure medication.

What contraceptive advice should I offer a woman with epilepsy?

When reviewing a woman or girl with epilepsy of childbearing potential:

• Ideally, offer advice about effective contraceptive before the woman become sexually active, to avoid unplanned pregnancies.
• Advise that epilepsy itself is a condition for which there are no restrictions on the use of contraceptive methods, but restrictions apply if the woman is taking valproate or topiramate antiseizure medication:
  • Valproate is contraindicated and should not be used in girls and women of childbearing potential unless other treatments are ineffective or not tolerated, as judged by two experienced specialists, and a pregnancy prevention programme is in place. Topiramate is contraindicated and should not be used in girls and women of childbearing potential unless a pregnancy prevention programme is in place.
    • The Medicines and Healthcare products Regulatory Agency (MHRA) patient guide What you need to know about valproate and the guide for healthcare professionals Information on the risks of valproate use in all patients may be helpful.
    • The medicines.org patient guide Topiramate pregnancy prevention programme may be helpful.
  • If already taking valproate, ensure the woman is using effective contraception. Advise not to stop taking valproate without advice from her specialist. If required, offer referral to a specialist to discuss the woman's treatment options.
  • If already taking topiramate, ensure the woman is using effective contraception during treatment and for at least 4 weeks after the last dose.
• Advise women with epilepsy who are not taking antiseizure medication, or are taking antiseizure medication which is not a teratogen or a hepatic enzyme inducer (except lamotrigine), that their contraceptive options are the same as for women in the general population.
• Advise women with epilepsy taking antiseizure medication which is a hepatic enzyme inducer (or stopped this within 28 days) that:
  • There is a risk of contraceptive failure if any form of combined hormonal contraception (oral, transdermal patches, vaginal ring), progesterone-only pill, or progestogen-only implants are used. Recommend the use of an alternative reliable contraceptive method, such as intrauterine contraception (levonorgestrel or copper) or depot medroxyprogesterone acetate injection. See the CKS topic on Contraception - assessment for more information.
  • If emergency contraception is needed, offer insertion of a copper intrauterine device (IUD) first-line within 5 days of unprotected intercourse. If a copper IUD is unacceptable, unsuitable, or unavailable, prescribe a single dose of oral levonorgestrel 3 mg (as opposed to 1.5 mg), ideally as soon as possible, and within 72 hours of unprotected intercourse. Alternatively, a single dose (30mg) of oral ulipristal acetate can be offered if indicated, with advice that effectiveness is unknown. See the CKS topic on Contraception - emergency for more information.
• Advise women with epilepsy who are taking lamotrigine (not a hepatic enzyme inducer) that:
  • Contraceptives containing the oestrogens ethinyloestradiol and levonorgestrel may reduce the effectiveness of lamotrigine which may result in increased seizure activity.
  • Progestogen-only contraceptives can be used with lamotrigine, but there is a theoretical risk of lamotrigine neurotoxicity (may present with dizziness, ataxia, diplopia).
  • The contraceptive effectiveness of combined hormonal contraception, all progestogenonly pills, and the etonogestrel implant could be reduced during use of lamotrigine. Advise additional reliable use of condoms with these contraceptive methods.
    • See the CKS topic on Contraception - assessment for more information.

How should I manage a woman with epilepsy who is planning a pregnancy or is pregnant?

• Ensure that women with epilepsy receive pre-pregnancy counselling at the time of diagnosis and at regular reviews, especially if they are taking antiseizure medication.
  
  • Discuss the potential risks to a developing fetus of taking antiseizure medication during pregnancy with women and girls of childbearing potential, now or in the future, such as congenital malformations, neurodevelopmental disorders, and fetal growth restriction.
  • ​​​​​​Provide general pre-conception advice on stopping smoking and alcohol in pregnancy. See the CKS topic on Pre-conception - advice and management for more information.
• Arrange urgent referral to an epilepsy specialist for a woman or girl with epilepsy who is planning pregnancy or is pregnant for a review of antiseizure medication options.
  • Advise to continue using effective contraception until she has been assessed by a specialist. See the section on Contraception for women on medication for more information.
  • Explain the importance of adherence to antiseizure medication, and advise not to stop medication without specialist review or advice.
  • Advise pregnant women with epilepsy of the risks of uncontrolled seizures, both to themselves and the developing fetus.
• If a woman with epilepsy is planning a pregnancy, advise that:
  • Most women with epilepsy will have an uncomplicated pregnancy, labour, and delivery and will have a healthy baby.
  • About two-thirds of women will not have a deterioration in their seizure control during pregnancy. Women who are seizure-free before conception are likely to remain so during pregnancy. There is a small increased risk of seizures in the children of parents with epilepsy.
  • Women with epilepsy who are not taking antiseizure medication probably do not have an increased risk of fetal malformations compared with women without epilepsy.
  • Both valproate and topiramate are contraindicated in pregnancy and should not be used in girls and women of childbearing potential unless other treatments are ineffective or not tolerated and a pregnancy prevention programme is in place. See the section on Contraception for women on medication for more detailed information.
• If a woman is taking antiseizure medication and presents with an unplanned pregnancy:
  • Explain the importance of adherence to antiseizure medication, and advise not to stop medication without specialist review or advice.
  • Arrange urgent referral to an epilepsy specialist for a review of antiseizure medication options.
  • Provide information about the UK Epilepsy and Pregnancy Register (website www.epilepsyandpregnancy.co.uk) and invite her to register.
• If a woman with epilepsy is planning a pregnancy or is pregnant and taking antiseizure medication, prescribe high-dose folic acid 5 mg daily, ideally pre-conception.
  • Advise to continue until at least the end of the first trimester to reduce the incidence of major congenital malformations.
  • If a woman with epilepsy is not taking antiseizure medication, advise to take folic acid 400 micrograms daily prior to conception and throughout the first trimester of pregnancy unless there is a family history of, or a previous child with, a neural tube defect, in which case prescribe high-dose folic acid 5 mg daily.
  • See the CKS topic on Pre-conception - advice and management for more information.
• Provide individualized information and support to women and girls with epilepsy, such as:
  • Contraception, conception, and pregnancy. The Royal College of Obstetricians and Gynaecologists (RCOG) patient information Epilepsy in pregnancy may be helpful.
  • To continue antiseizure medication postnatally, depending on specialist advice.
  • To minimize potential provoking factors for seizures such as sleep deprivation, stress, and pain in the postnatal period, wherever possible.
  • Breastfeeding while taking antiseizure medication is generally safe and should be encouraged.
  • Caring for young children, including potential hazards and safety, such as bathing infants.
  • Seizure pattern may change around the menopause. See the CKS topic on Menopause for more information.

What contraceptive advice should I offer a man with epilepsy?

• Inform men (of any age) who may father children if started on valproate antiseizure medication:
  • There is a possible association between sodium valproate use in men around the time of conception and an increased risk of neurodevelopmental disorders in their children.
  • To use effective contraception (condoms, plus contraception used by their female sexual partner) throughout valproate treatment and for at least three months after stopping treatment.
  • Not to donate sperm during valproate treatment and for three months after stopping valproate.
• If a man taking valproate antiseizure medication is planning to start a family in the next year, refer to an epilepsy specialist to discuss alternative medication options.
• If a man is taking valproate antiseizure medication and has a female sexual partner who is pregnant or planning a pregnancy (including those using assisted reproductive techniques), arrange referral for pre-conceptual counselling. See the section on Planning pregnancy or pregnant for more information.

Prescribing issues

• The Scottish Intercollegiate Guidelines Network (SIGN) states that routine switching between different manufacturers of AEDs should be avoided [SIGN, 2018].
  • Formulations of antiseizure medications are not interchangeable and generic substitution should not be made routinely [SIGN, 2018].
• The Medicines and Healthcare products Regulatory Agency (MHRA) has issued safety advice on switching between different manufacturers' products of a particular antiseizure medication.
  • It classifies antiseizure medication used for the treatment of epilepsy into three categories, to help decide if it is necessary to maintain continuity of supply of a specific manufacturer's product [MHRA, 2017]:
    • Category 1 (ensure the person is maintained on a specific manufacturer's product) — phenytoin, carbamazepine, phenobarbital, primidone.
    • Category 2 (use clinical judgement and discuss seizure frequency and treatment history with the person and/or carer) — valproate, lamotrigine, perampanel, retigabine, rufinamide, clobazam, clonazepam, oxcarbazepine, eslicarbazepine, zonisamide, topiramate.
    • Category 3 (usually unnecessary to maintain the person on a specific manufacturer's product unless there is patient anxiety, risk of confusion, or risk of dosing errors) — levetiracetam, lacosamide, tiagabine, gabapentin, pregabalin, ethosuximide, vigabatrin, brivaracetam.

Adverse effects

Many adverse effects of antiseizure medications are dose-related and predictable. Older people may be more sensitive to adverse effects [SIGN, 2018].

• Idiosyncratic drug reactions usually occur in the first weeks of treatment and are potentially serious, such as severe cutaneous reactions. Rash occurs in up to 10% of people taking carbamazepine, phenytoin, or lamotrigine [SIGN, 2018]. All antiseizure medications can cause a rash, ranging from a mild erythematous maculopapular rash to severe reactions such as Stevens-Johnson syndrome or toxic epidermal necrolysis [Gavvala, 2016]. Most rashes are mild and resolve on discontinuation of the drug [SIGN, 2018].
  • Be aware that phenytoin is associated with an increased risk of serious skin reactions in people of Han Chinese or Thai family background [NICE, 2025].
  • Be aware that carbamazepine and potentially medicines with a similar chemical structure (such as oxcarbazepine and eslicarbazepine acetate) are associated with an increased risk of serious skin reactions in people of Han Chinese, Thai, European, or Japanese family background [NICE, 2025].
• All antiseizure medications can cause fatigue, dizziness, blurred vision, incoordination, and gait imbalance which tend to be dose-dependent adverse effects [Kaarkuzhali, 2016]. Sedation and dizziness are common when starting treatment but usually resolve with time [SIGN, 2018].
  • The life-threatening antiseizure medication hypersensitivity syndrome of fever, rash, lymphadenopathy, and multiorgan failure occurs in up to 4.5 in 10,000 people, mostly with carbamazepine, lamotrigine, or phenytoin [SIGN, 2018]. Advise the person to stop the drug immediately and seek urgent medical advice if they develop symptoms such as rash, bruising, drowsiness, or vomiting, particularly if they have recently started antiseizure medication in the last few weeks [SIGN, 2018].
  • Acute psychotic reactions are seen occasionally with vigabatrin, topiramate, and tiagabine, particularly in people with a previous history of psychiatric illness. Recovery usually occurs on withdrawal from the drug [SIGN, 2018].
  • Minor blood dyscrasias are associated with many antiseizure medications, such as mild leucopenia with carbamazepine and thrombocytopenia with sodium valproate [SIGN, 2018].
  • Hyponatraemia is seen in about 20% of people taking carbamazepine or oxcarbazepine and is usually well tolerated [SIGN, 2018].
  • Elevation of liver enzymes is seen in people taking enzyme-inducing antiseizure medications, and is usually of no clinical significance [SIGN, 2018]. See the section on Hepatic enzyme inducers for more information.
  • Decreased bone mineral density and increased risk of osteomalacia may occur with longterm treatment with some antiseizure medications (such as carbamazepine, phenytoin, primidone, and sodium valproate) [MHRA, 2014; NICE, 2025].
• For further information on the adverse effects of individual antiepileptic drugs, see the electronic Medicines Compendium (eMC), or the British National Formulary (BNF).

Hepatic enzyme inducers

• Enzyme-inducing antiseizure medications include:
  • Carbamazepine.
  • Eslicarbazepine acetate.
  • Oxcarbazepine.
  • Perampanel (at a dose of 12 mg daily or more).
  • Phenobarbital.
  • Phenytoin.
  • Primidone.
  • Rufinamide.
  • Topiramate (at a dose of 200 mg daily or more). Note: as topiramate is a teratogen and there is wide inter-individual variability in the metabolism of contraceptive hormones, the College of Sexual and Reproductive Healthcare (CoSRH) suggests considering topiramate as a potential enzyme inducer, regardless of dose [FSRH 2022 hormonal contraception].
• Non enzyme-inducing antiseizure medications include:
  • Acetazolamide.
  • Clobazam.
  • Clonazepam.
  • Ethosuximide.
  • Gabapentin.
  • Lacosamide.
  • Lamotrigine (note: combined hormonal contraceptives can affect the metabolism of lamotrigine).
  • Levetiracetam.
  • Perampanel (at a dose of less than 12 mg daily).
  • Pregabalin.
  • Sodium valproate.
  • Tiagabine.
  • Topiramate (at a dose of less than 200 mg daily).
  • Vigabatrin.
  • Zonisamide.

[SIGN, 2018]