• Refer people with suspected epilepsy for specialist assessment within 14 days.
• For people having a seizure:
• Take steps to prevent injury, and
• Give diazepam or midazolam for tonic–clonic seizures if they are prolonged or recurrent, and
• Consider hospital admission.
• Arrange a routine review of all people with epilepsy at least once a year to assess and manage:
• Seizure control and adverse effects of treatment.
• Social or psychological issues relating to the epilepsy.
• Carers skills in managing seizures.
• Their information needs.
• Ensure women receiving antiepileptic drugs are well informed about:
• Contraception, and
• The risks associated with pregnancy and epilepsy.
• Ensure women who are planning pregnancy are:
• Reviewed by an epilepsy specialist, to discuss the benefits and risks of adjusting treatment before conception.
• Prescribed folic acid 5 mg daily.
• Ensure women who are pregnant are referred urgently for specialist review (if they have not previously been seen), to consider treatment alteration to reduce the fetal risk from antiepileptic drug exposure.

• Urgently refer all people suspected of having a first epileptic seizure to a specialist with training and expertise in epilepsy, to establish the diagnosis. Ensure:
• They are seen within 14 days of referral.
• The referral letter includes a detailed description of the seizure from a first-hand witness (if available), with contact details of the witness.
• Advise the family or carers of the person with suspected epilepsy:
• How to recognize and manage a seizure.
• To record further episodes of possible seizures. This can be done using video (which may be available on a mobile phone) or in a diary.
• Advise the person with suspected epilepsy:
• To stop driving while waiting to see the specialist, and to avoid potentially dangerous work or leisure activities. In particular, they should avoid swimming, and ensure bathing is undertaken with supervision to avoid the risk of drowning.
• To take a witness of the seizure to the first hospital appointment if possible.
• To contact their GP if further episodes occur while they are waiting to see the specialist. The GP should seek specialist advice if they are concerned about the person having recurrent episodes of suspected seizures.
• Inform the person about:
• What happens during an epileptic seizure.
• What to expect when they see the specialist.
• Provide written information to support verbal advice.
• Information leaflets are available from Epilepsy Research UK, through CKS, including:
• Epilepsy: What is epilepsy (eruk)
• Epilepsy: What to do when someone has a seizure (eruk)
• Epilepsy: Recording seizures (eruk)
• Epilepsy: Diagnosing epilepsy (eruk)
• Information leaflets are also available from:
• Epilepsy Action
• Epilepsy Research UK
• Joint Epilepsy Council
• The National Society for Epilepsy

• The recommendation to refer for specialist confirmation of a diagnosis of epilepsy is based on expert opinion supported by limited evidence from two observational studies (n = 263 and n = 230) considered by the National Institute for Health and Clinical Excellence [NICE, 2004c]. These studies found that when people with an established diagnosis of epilepsy were reviewed by experts:
• Approximately 25% of people did not, in fact, have epilepsy.
• The highest rate of misdiagnosis occurred in people diagnosed by generalists.
• The recommendations to ensure that adequate verbal and written advice is provided for people with suspected epilepsy is based on expert opinion [NICE, 2004c; NHS Newcastle et al, 2008].

• For people having a tonic–clonic seizure of less than 5 minutes' duration:
• Look for an epilepsy identity card or jewelry.
• Protect them from injury by:
• Cushioning their head with your hands or soft material.
• Removing harmful objects from nearby, or if this is not possible, moving the person away from immediate danger.
• Do not restrain them or put anything in their mouth.
• When the seizure stops, check their airway and place them in the recovery position.
• Observe them until they have recovered.
• Examine for, and manage, any injuries.
• Arrange emergency admission if it is their first seizure.
• For people having a tonic–clonic seizure lasting more than 5 minutes, or who have more than three seizures in an hour, in addition to the measures described above:
• Treat with either:
• Buccal midazolam, or
• Rectal diazepam.
• Call an ambulance for urgent hospital admission if seizures do not respond promptly to treatment with diazepam or midazolam. The aim is to ensure that people with persistent seizures arrive at the Accident and Emergency department within 30 minutes of the onset of the seizure.
• Call an ambulance for urgent hospital admission if seizures do respond to treatment but:
• Seizures were prolonged or recurrent before treatment was given, particularly if seizures had developed into status epilepticus. This is defined as a continuous seizure for 30 minutes or longer, or recurrent seizures without regaining consciousness lasting 30 minutes or longer.
• 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.
• For people having other types of seizures (simple partial, complex partial, absence, tonic, atonic, and myoclonic seizures):
• Protect them from injury by removing harmful objects from nearby, or if this is not possible, moving them away from immediate danger.
• Observe them until they have fully recovered.
• Examine for, and manage, any injuries.
• If symptoms persist, consider arranging admission or seeking specialist advice.

• The management of people having a seizure for less than 5 minutes is based on expert advice [Epilepsy Action, 2005a]. It is widely accepted that drug treatment for self-limiting, short duration seizures is unnecessary.
• The treatment of people having prolonged or repeated seizures with rectal diazepam or buccal midazolam is based on evidence from five randomized controlled trials (RCTs) considered by the National Institute for Health and Clinical Excellence [NICE, 2004c].
• Three RCTs (n = 275) found that rectal diazepam was effective at terminating prolonged and repeated seizures in adults and children in the community when compared with placebo.
• One RCT (n = 42) found that rectal diazepam and buccal midazolam were similarly effective at controlling prolonged seizures in children with severe epilepsy.
• One RCT (n = 44) found that intranasal midazolam was more effective than rectal diazepam at controlling acute seizures in children.
• Admission criteria for people having prolonged or repeated seizures is based on expert opinion [NICE, 2004c].
• The management of people having other types of seizures is based on expert opinion [Epilepsy Reseach UK, 2008].

• Undertake a structured routine review of all people with epilepsy in primary care at least once a year to assess:
• Seizure control and adverse effects of treatment.
• Social or psychological issues relating to the epilepsy.
• Carers' skills in managing seizures.
• The person's information needs.
• Ensure all children and people with learning disabilities are also reviewed by a specialist at least once a year.
• Routine specialist review of other people with epilepsy is at the discretion of the specialist once they have established the diagnosis and planned the person's treatment. This review may be carried out by an epilepsy specialist nurse.

[SIGN, 2003; NICE, 2004c; Epilepsy Action, 2005b; SIGN, 2005]

• Assess:
• Seizure control by assessing seizure frequency and severity, and changes in these since the last review.
• For people who have more than one type of seizure, identify how frequently they have each seizure type.
• Encourage people to use a seizure diary to help this assessment.
• The tolerability of drug treatment.
• Ask about compliance and adverse effects of treatment.
• Consider measuring blood levels of antiepileptic drugs if drug toxicity or non-compliance is suspected.
• Refer for review by an epilepsy specialist if:
• Seizure control is poor or unacceptable or drug treatment is poorly tolerated.
• The person has been seizure-free for the last 2 years and would like to consider tapering or withdrawing their treatment. Ensure that they understand:
• The risk and consequences of seizure recurrence following withdrawal of treatment.
• That they are not entitled to drive from the start of the period of withdrawal and for 6 months after stopping treatment, or if seizures recur.
• For further information on driving entitlement, see Medical Standards of Fitness to Drive.
• For people taking antiepileptic drugs:
• Offer lifestyle and dietary advice on how to reduce the risk of osteoporosis. For detailed information on lifestyle advice, see the CKS topic on Osteoporosis - preventing steroid-induced.
• Consider vitamin D supplementation if the person is at increased risk of osteoporosis, osteopenia, and fractures caused by:
• Being immobile for long periods.
• Inadequate exposure to sunlight.
• Inadequate dietary calcium.
• At present there is a lack of evidence or published expert opinion to guide the choice of preparation or dose.
• For women and girls approaching sexual maturity ensure that they are informed about contraception, the risks of antiepileptic drugs during pregnancy, and how to reduce these risks when planning a pregnancy.
• Discuss prescribing folic acid supplements to women of child-bearing potential to reduce the risk of fetal malformation in the event of unplanned pregnancy.
• Discuss specialist referral with women who are taking sodium valproate who are of child-bearing potential, to consider changing treatment to a drug with less risk of fetal malformation in the event of unplanned pregnancy.
• For further information, see the sections on Pregnancy planning and pregnancy and Contraception for women on AEDs, and the CKS topic on Contraception.
• Ensure the same drug brand is prescribed (not generic) when re-authorizing repeat prescriptions.
• Ensure the person is well informed about their treatment and provide written information to support verbal advice.
• See the patient information leaflets on Epilepsy: Anti-epileptic drugs (eruk) and Epilepsy: Anti-epileptic drugs: FAQs (eruk), produced by Epilepsy Research UK, and available through CKS. These leaflets provide advice about:
• Possible adverse effects of treatment.
• When to seek help for problems with treatment or seizure control.
• What to do if medications are missed or likely to be rendered ineffective due to vomiting or diarrhoea.
• Entitlement to free prescriptions.
• Ensure the person understands the importance of compliance with treatment to reduce the risk of seizures and sudden unexpected death in a person with epilepsy.

• Enzyme-inducing antiepileptic drugs include [NICE, 2004c]:
• Carbamazepine
• Oxcarbazepine
• Phenobarbital
• Phenytoin
• Primidone
• Topiramate
• Adverse effects of antiepileptic drugs include [Epilepsy Action, 2005b]:
• Drowsiness, lethargy, and loss of concentration.
• Aggression or agitation.
• Headache, visual disturbances, tremor, and ataxia.
• Weight gain and weight loss.
• Hair loss and unwanted hair growth.
• Menstrual disturbances.
• Gum swelling.
• Skin rashes.
• For more detailed information about the adverse effects of individual antiepileptic drugs see Appendix G (pdf) of The diagnosis and management of the epilepsies in adults and children in primary and secondary care.
• For full details of adverse effects see the British National Formulary.

• The recommendations to refer for review by an epilepsy specialist when seizure control is unacceptable, drug treatment is poorly tolerated, or withdrawal of treatment is being considered are based on expert opinion [SIGN, 2003; NICE, 2004c].
• These are pragmatic recommendations to ensure that people with difficult-to-manage problems are managed by clinicians with the most expertise.
• The recommendation to consider vitamin D supplementation for people taking any antiepileptic drug at high risk of osteoporosis is extrapolated from recent advice from the Medicines and Healthcare products Regulatory Agency (MHRA) that vitamin D supplementation should be considered in people at high-risk for osteoporosis who receive treatment with primidone, phenytoin, carbamazepine, phenobarbital or sodium valproate [MHRA, 2009].
• A meta-analysis of studies evaluating the effect of antiepileptic drugs on bone mineral density and fracture risk [Vestergaard, 2005] found that:
• Antiepileptic drugs reduce bone mineral density at both the spine (z-score –0.38; p < 0.05) and the hip (z-score –0.56; p < 0.05).
• There was a trend towards antiepileptic drugs increasing fracture risk: pooled relative risk of any fracture whilst taking antiepileptic drugs 2.18, 95% CI 1.94 to 2.45.
• The majority of the data included in this meta-analysis were from people taking the primidone, phenytoin, carbamazepine, phenobarbital or sodium valproate.
• Data from a large case-control study (n = 498,617) included in this meta-analysis [Vestergaard et al, 2004]:
• Found that patients taking carbamazepine, oxcarbazepine, clonazepam, phenobarbital, and sodium valproate were associated with an increased fracture risk.
• Suggested there may be a trend towards an increased risk of fracture for other antiepileptic drugs (ethosuximide, lamotrigine, phenytoin, primidone, tiagabine, topiramate, vigabatrin). However, statistical significance was not reached for these drugs, probably because of the low numbers of people in each group and means this effect is uncertain.
• The recommendation to ensure women and girls approaching sexual maturity are informed about contraception, the risks of antiepileptic drugs during pregnancy, and how to reduce these risks is based on expert opinion [NICE, 2004c].
• The recommendation to ensure that the same drug brand is prescribed when re-authorizing repeat prescriptions is based on expert opinion [NICE, 2004c]. This is because there may be clinically important differences in bioavailability between different brands of the same drug that might affect seizure control.
• The recommendation to ensure that adequate verbal and written advice is provided for people with epilepsy and their carers is based on evidence, considered by the National Institute for Heath and Clinical Excellence, which found that people are often given inadequate information about epilepsy and its treatment [NICE, 2004c].
• A systematic review identified 40 primary research papers published between 1990 and 2000 [Couldridge et al, 2001]. It found that individuals require more information on epilepsy in general, diagnosis, treatment options, medications and their adverse effects, seizures and seizure control, prognosis, injury prevention, psychological issues, social security, driving and insurance, employment, lifestyle, and social issues.

• Assess symptoms and signs of anxiety or depression and manage appropriately. For further information on the identification and management of depression, see the CKS topic on Depression.
• Assess how the person is managing their daily life with epilepsy.
• If the person is driving, or wants to drive, ensure that they are entitled to do so — see Medical Standards of Fitness to Drive for further information. Offer them the information leaflet on Epilepsy: Driving (eruk), produced by Epilepsy Research UK and available through CKS.
• It is the legal responsibility of the person with epilepsy to inform the Driver and Vehicle Licensing Agency (DVLA) about their condition.
• If they do not inform the DVLA and continue driving despite being advised to stop, the clinician should make every reasonable effort to persuade them to do so. If this fails, the clinician should inform the DVLA personally and write to the patient to explain what has been done.
• For people who are working or seeking work, ask about any problems they have with work relating to their epilepsy. If they are having difficulties, suggest:
• The leaflet on work and epilepsy, from Epilepsy Action.
• Getting help from Disability Employment Advisers located at their local job centre.
• Offer verbal and written advice about managing the risks from epilepsy in their daily life. The following information leaflets are produced by Epilepsy Research UK, and available through CKS:
• Epilepsy: Balancing risk and safety (eruk)
• Epilepsy: Safety in the home (eruk)
• Epilepsy: Safety in school, college and university (eruk)
• Epilepsy: Safety at work (eruk)
• Epilepsy: Safety in sport (eruk)
• Epilepsy: Leisure and pleasure - safety issues (eruk)
• The following leaflet is available from Epilepsy Action:
• Epilepsy and caring for children
• Offer verbal and written advice on obtaining disability living allowance and other benefits. Information leaflets are available from Epilepsy Action including information on the Disability living allowance.

• The recommendation to assess people for depression and anxiety is based on expert opinion [Elger and Schmidt, 2008]. It is recommended because there is evidence of a higher prevalence of these conditions in people with epilepsy.
• The lifetime prevalence of depression, suicidal ideation, and generalized anxiety disorders is twice as high in people with epilepsy than in the general population.
• The risk of suicide is highest in people with epilepsy who do not respond well to treatment.
• The recommendation to ensure that adequate verbal and written advice is provided for people with epilepsy and their carers is based on evidence, considered by the National Institute for Health and Clinical Excellence, that found that people are often given inadequate information about epilepsy and its treatment [NICE, 2004c].
• A systematic review identified 40 primary research papers published between 1990 and 2000 [Couldridge et al, 2001]. It found that individuals require more information on epilepsy in general, diagnosis, treatment options, medications and their adverse effects, seizures and seizure control, prognosis, injury prevention, psychological issues, social security, driving and insurance, employment, lifestyle, and social issues.

Ensure that the carers of the person with epilepsy:

• Have been instructed in first aid for people having a seizure. An information leaflet produced by Epilepsy Research UK and available through CKS, Epilepsy: What to do when someone has a seizure (eruk), is available to support verbal advice.
• Are familiar with the agreed protocol for giving rectal diazepam or buccal midazolam for prolonged or recurrent seizures, and how to administer the treatment (if they have been authorized to do so).

These are pragmatic recommendations based on expert opinion [SIGN, 2003; NICE, 2004c].

• Ensure that people with epilepsy and their carers:
• Have a named primary healthcare professional to contact for help with problems relating to their epilepsy. This could be:
• A general practitioner, or
• A trained practice nurse, or
• An epilepsy specialist nurse, if available.
• Are aware of sources of information about epilepsy and its treatment, from groups such as:
• Epilepsy Action
• Epilepsy Research UK
• Joint Epilepsy Council
• The National Society for Epilepsy

• The recommendation to ensure that people with epilepsy and their carers have a named primary healthcare professional to contact for help is based on expert opinion [NICE, 2004c].
• The recommendation to ensure that people are aware of sources of information about epilepsy and its treatment is based on evidence, considered by the National Institute for Health and Clinical Excellence, which found that people are often given inadequate information about epilepsy and its treatment [NICE, 2004c].
• A systematic review identified 40 primary research papers published between 1990 and 2000 [Couldridge et al, 2001]. It found that individuals require more information on epilepsy in general, diagnosis, treatment options, medications and their adverse effects, seizures and seizure control, prognosis, injury prevention, psychological issues, social security, driving and insurance, employment, lifestyle, and social issues.

• For women planning a pregnancy:
• Inform the woman about the risks associated with pregnancy and epilepsy.
• Although most women with epilepsy have a normal pregnancy and delivery, the risk of complications during pregnancy and labour is higher than for women without epilepsy.
• The risks associated with inadequate seizure control may be more detrimental to the fetus than the use of antiepileptic drugs.
• Although there is an increased risk of seizures in the children of parents with epilepsy, the probability that a child will be affected is generally low.
• Refer the woman to an epilepsy specialist if she is taking antiepileptic drugs for review of her epilepsy treatment before she becomes pregnant, to discuss the relative risks and benefits of adjusting her medication. Advise her to:
• Continue using effective contraception until a full assessment by the specialist has taken place.
• Continue her antiepileptic drugs and make an urgent appointment to see a GP if she becomes unexpectedly pregnant.
• Prescribe folic acid 5 mg daily. This should be continued throughout the first trimester of pregnancy.
• For further information, see the CKS topic on Pre-conception - advice and management.
• For women who have become pregnant:
• Advise the woman to continue her antiepileptic drugs and refer her urgently for review by an epilepsy specialist (if she has not been reviewed before becoming pregnant).
• Encourage her to notify the pregnancy, or allow her clinician to notify the pregnancy, to the UK Epilepsy and Pregnancy Register (www.epilepsyandpregnancy.co.uk).

The risks to the fetus from antiepileptic drugs (AEDs).

• Impaired cognitive function is more common in children exposed to sodium valproate during pregnancy, when assessed at 3 years of age, compared with children of mothers taking other antiepileptic drugs [Meador et al, 2009].
• Major and minor malformations are more common in infants exposed to AEDs during pregnancy [SIGN, 2003; Morrow et al, 2006].
• The overall risk of a major fetal abnormality in any pregnancy in the general population is about 2%.
• This risk is increased in women taking AEDs and is dependant on the individual drug, the dose, and the number of AEDs taken. For women taking a single AED:
• The risk with carbamazepine is 2.2%.
• The risk with lamotrigine is about 3% at a daily dose of 200 mg or less, and about 5% at a daily dose of more than 200 mg.
• The risk with sodium valproate is about 5% at a daily dose of less than 1000 mg, and about 9% at a daily dose of more than 1000 mg.
• The risk is increased with an increasing number of AEDs taken, and may be up to 24% in women taking four AEDs.
• The most common major malformations associated with established AEDs are:
• Neural tube defects.
• Orofacial defects.
• Congenital heart abnormalities.
• Hypospadias.
• At present there is insufficient evidence on which to advise on the risk of abnormalities from the newer AEDs.

• The recommendation to inform women about the risks of antiepileptic drugs (AEDs) in pregnancy is based on expert advice, to ensure that women can make informed choices about the risks affecting their pregnancy [SIGN, 2003; NICE, 2004c; SIGN, 2005].
• The risk of major malformations has been examined by a prospective study from the UK Epilepsy and Pregnancy Register of 3607 pregnancies of women taking AEDs during pregnancy [Morrow et al, 2006].
• The risk of impaired cognitive function in children exposed to sodium valproate during pregnancy has been examined by a prospective study of 309 children at 3 years of age who were exposed to AEDs during pregnancy [Meador et al, 2009]. On average, children exposed to valproate had an IQ 9 points lower than children exposed to lamotrigine (95% CI 3.1 to 14.6).
• The recommendation to refer all women receiving AEDs for specialist review is based on expert opinion [SIGN, 2003; NICE, 2004c; SIGN, 2005]. This is recommended to ensure the woman receives expert advice about the risks and benefits of adjusting her treatment to manage the risk to herself and her fetus in the most acceptable way. Adjustments that may be considered include:
• Withdrawal of treatment or a dose reduction if seizures have been well controlled.
• Switching from sodium valproate to an AED that is less likely to cause harm to the fetus.
• The recommendation to prescribe folic acid 5 mg daily is based on evidence of the effectiveness of folic acid at reducing the incidence of neural tube defects. A summary of the evidence is available in the CKS topic on Pre-conception - advice and management.
• The recommendation to encourage women with epilepsy who become pregnant to notify the UK Epilepsy and Pregnancy Register is to allow information to be gathered to improve the future management of pregnant women with epilepsy [NICE, 2004c].

• Ensure that all women with epilepsy who are of reproductive age or who are approaching reproductive age are well informed about contraception in general.
• Ensure that women who want to use the combined oral contraceptive (COC) are informed that:
• Enzyme-inducing antiepileptic drugs may alter the effectiveness of hormonal contraceptive methods.
• Lamotrigine may become less effective at controlling seizures after the woman starts taking the COC, requiring an increase in the dose of lamotrigine to maintain seizure control.
• Barrier methods and intrauterine devices are the most suitable methods of contraception for women taking enzyme-inducing antiepileptic drugs and lamotrigine.
• For further information see:
• The section on Epilepsy in the CKS topic on Contraception.
• The section on Women on a liver enzyme-inducing drug in the CKS topic on Contraception - emergency.

• Enzyme-inducing antiepileptic drugs include:
• Carbamazepine
• Oxcarbazepine
• Phenobarbital
• Phenytoin
• Primidone
• Topiramate

• These recommendations are based on expert opinion on managing the reduced effectiveness of hormonal methods of contraception due to their increased metabolism in people taking enzyme-inducing antiepileptic drugs [SIGN, 2003; NICE, 2004c].
• The effect of combined oral contraceptives (COCs) on lamotrigine:
• There is evidence from a case series and small retrospective studies that for women taking lamotrigine, seizure control can worsen after starting a COC [FFPRHC, 2005].