Epilepsy

Short Text

The epilepsies: diagnosis and management of the epilepsies in adults and children in primary and secondary care

Introduction

This pathway covers the diagnosis and management of the epilepsies in children, young people and adults in primary and secondary care.
Epilepsy is a common neurological disorder characterised by recurring seizures. Different types of epilepsy have different causes. Accurate estimates of incidence and prevalence are difficult to achieve because identifying people who may have epilepsy is difficult. Epilepsy has been estimated to affect between 362,000 and 415,000 people in England. In addition, there will be further individuals, estimated to be 5–30%, so amounting to up to another 124,500 people, who have been diagnosed with epilepsy, but in whom the diagnosis is incorrect. Incidence is estimated to be 50 per 100,000 per year and the prevalence of active epilepsy in the UK is estimated to be 5–10 cases per 1000. Two-thirds of people with active epilepsy have their epilepsy controlled satisfactorily with anti-epileptic drugs (AEDs). Other approaches may include surgery. Optimal management improves health outcomes and can also help to minimise other, often detrimental, impacts on social, educational and employment activity. 'The epilepsies' (NICE clinical guideline 20) stated that the annual estimated cost of established epilepsies was £2 billion (direct and indirect costs).
Newer and more expensive AEDs are being prescribed for people with epilepsy, and with an increase in treatment costs likely in coming years it is essential to ensure that AEDs with proven clinical and cost effectiveness are identified. New evidence regarding AEDs has been reviewed within 'The epilepsies' (NICE clinical guideline 137), and recommendations on AED treatment for epilepsy are included in this pathway. See pharmacological treatment tables for a summary of recommended pharmacological treatment based on epilepsy syndrome or seizure type.
This pathway assumes that prescribers will use a drug's summary of product characteristics to inform decisions made with individual patients.
This pathway recommends some drugs for indications for which they do not have a UK marketing authorisation at the date of publication, if there is good evidence to support that use. Where recommendations have been made for the use of drugs outside their licensed indications ('off-label use'), these drugs are marked with a footnote in the recommendations.

Source guidance

The NICE guidance that was used to create the pathway.
The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. NICE clinical guideline 137 (2012)
Retigabine for the adjunctive treatment of partial onset seizures in epilepsy. NICE technology appraisal guidance 232 (2011)
Deep brain stimulation for refractory epilepsy. NICE interventional procedure guidance 416 (2012)
Vagus nerve stimulation for refractory epilepsy in children. NICE interventional procedure guidance 50 (2004)

Quality standards

Quality statements

Effective interventions library

Successful effective interventions library details

Implementation

Assessment tools

The baseline and self-assessment tools are Excel spreadsheets that can be used by organisations to identify if they are in line with practice recommended in NICE guidance and to help them plan activity that will help them meet the recommendations.
The epilepsies: baseline assessment tool

Costing support

Costing support includes national cost impact reports that summarise the national costs and savings and discuss the assumptions used; costing templates to assess the impact on local budgets; and costing statements when the impact is not significant or impossible to quantify at a national level.
The epilepsies: diagnosis and management of the epilepsies in adults and children in primary and secondary care: costing statement
Retigabine for the adjunctive treatment of partial onset seizures in epilepsy: costing statement

Education tools

NICE has developed online learning modules, in collaboration with a range of providers, including BMJ Learning, to update knowledge on evidence and NICE guidance.
The epilepsies: online educational tool
The epilepsies: NPC online educational tools

Information resources and templates

These include key points for scrutiny or compliance assessment, signposting to resources, checklists and case studies. They are designed to offer practical help in putting NICE guidance into practice and the format depends on the specific topic.
The epilepsies: pharmacological treatment by epilepsy syndrome
The epilepsies: pharmacological treatment by seizure type

Learning resources

Learning resources are designed to support people to run workshops and for individual learning. They include clinical case scenarios, presentations for trainers and tests for participants.
The epilepsies: clinical case scenarios – children and young people
The epilepsies: clinical case scenarios – adults

Slide sets

Slide sets provide a framework for discussion and assist in local dissemination of the guidance. The slides contain the key messages from NICE guidance and can be tailored for local presentations.
The epilepsies: diagnosis and management of the epilepsies in adults and children in primary and secondary care: slide set

Pathway information

Information for patients and the public

NICE produces booklets for patients and the public, called 'Understanding NICE guidance'. They summarise, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written a booklet for patients and the public explaining its guidance on each of the following topics.

Information about epilepsy

The diagnosis and management of epilepsy in children, young people and adults

Information about drug treatments or devices

Retigabine as add-on treatment for partial onset seizures in epilepsy

Information about surgery

Vagus nerve stimulation for refractory epilepsy in children
Deep brain stimulation for difficult-to-treat epilepsy

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If someone does not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent and the code of practice that accompanies the Mental Capacity Act. In Wales, healthcare professionals should follow advice on consent from the Welsh Government. If the person is under 16, healthcare professionals should follow the guidelines in Seeking consent: working with children.

Updates to this pathway

24 February 2012 Minor maintenance updates.

Supporting information

Differences in recommendations for helping people to cope with epilepsy

Recommendations specific for children and young people

In children and young people, self-management of epilepsy may be best achieved through active child-centred training models and interventions.

Recommendations specific for adults

Adults should receive appropriate information and education about all aspects of epilepsy. This may be best achieved and maintained through structured self-management plans.

Licensing indications

Detailed below are the anti-epileptic drugs (AEDs) that have been recommended in this pathway but that do not currently have licensed indications for these seizures types or syndromes or particular populations.
Seizure type/syndrome
Drug
Details of licensing
Treatment of refractory focal seizures
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Eslicarbazepine acetate
At the time of publication, eslicarbazepine acetate did not have UK marketing authorisation for use in children younger than 18 years. It was not recommended owing to a lack of data on safety and efficacy (SPC).
Gabapentin
At the time of publication, gabapentin did not have UK marketing authorisation for use in children younger than 6 years and at doses over 50 mg/kg daily in children younger than 12 years (BNFC). The use of gabapentin was not recommended in children younger than 6 years owing to the lack of sufficient supporting data (SPC).
Pregabalin
At the time of publication, pregabalin did not have UK marketing authorisation for use in children (BNF). Pregabalin was not recommended for use in children younger than 12 years and adolescents (12–17 years) owing to insufficient data on safety and efficacy (SPC).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in children younger than 18 years owing to insufficient data on safety and efficacy (SPC).
GTC
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Oxcarbazepine
At the time of publication, oxcarbazepine did not have UK marketing authorisation for GTC seizures (BNF). It had authorisation for focal seizures with or without secondary GTC seizures (BNF).
Absence seizures
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine had UK marketing authorisation for monotherapy of typical absence seizures for those aged 2–12 years only. There was not authorisation outside of this age range (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for use in absence seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in absence seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in absence seizures. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
Myoclonic seizures
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for monotherapy use in myoclonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in myoclonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in myoclonic seizures. It had authorisation for use in adjunctive treatment of refractory focal seizures with or without secondary generalisation (BNF).
Tonic or atonic seizures
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for use in tonic or atonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures, GTC seizures and seizures associated with Lennox–Gastaut syndrome. It also had authorisation for monotherapy of typical absence seizures for children aged 2–12 years (BNF, BNFC).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in tonic or atonic seizures. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Infantile spasms
ACTH (tetracosactide)
At the time of publication, ACTH (tetracosactide) did not have UK marketing authorisation for infantile spasms. Depot ampoules are not recommended in infants and children younger than 3 years owing to the presence of benzyl alcohol in the formulation (SPC).
Lennox–Gastaut syndrome
Felbamate
At the time of publication, felbamate did not have UK marketing authorisation. There was no SPC available.
Dravet syndrome
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children under 3 years of age (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in Dravet syndrome. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type)
Carbamazepine
At the time of publication, carbamazepine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for focal and GTC seizures (BNF).
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Eslicarbazepine acetate
At the time of publication, eslicarbazepine acetate did not have UK marketing authorisation for use in children younger than 18 years. It was not recommended owing to a lack of data on safety and efficacy (SPC).
Gabapentin
At the time of publication, gabapentin did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for use in focal seizures with and without secondary generalisation (BNF) but it did not have UK marketing authorisation for use in children younger than 6 years and at doses over 50 mg/kg daily in children younger than 12 years (BNFC). The use of gabapentin was not recommended in children younger than 6 years owing to the lack of sufficient supporting data (SPC).
Lacosamide
At the time of publication, lacosamide did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for adjunctive treatment of focal seizures with or without secondary generalisation (BNF).
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for monotherapy and adjunctive treatment of focal and GTC seizures, seizures associated with Lennox–Gastaut syndrome, and monotherapy treatment of typical absence seizures in children aged 2 to 12 years (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNFC).
Oxcarbazepine
At the time of publication, oxcarbazepine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for focal seizures with or without secondary GTC seizures (BNF).
Pregabalin
At the time of publication, pregabalin did not have UK marketing authorisation for use in children (BNF). Pregabalin was not recommended for use in children younger than 12 years and adolescents (12–17 years) owing to insufficient data on safety and efficacy (SPC).
Tiagabine
At the time of publication, tiagabine did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for focal seizures with or without secondary generalisation that are not satisfactorily controlled by other antiepileptics (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox-Gastaut syndrome (BNF).
Vigabatrin
At the time of publication, vigabatrin did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome. It can be prescribed in combination with other epileptic treatment for focal epilepsy with or without secondary generalisation (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for BECTS/Panayiotopoulos syndrome and late-onset childhood occipital epilepsy (Gastaut type). It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
IGE
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for use in IGE. It had authorisation for monotherapy and adjunctive treatment of focal and GTC seizures, seizures associated with Lennox–Gastaut syndrome, and monotherapy treatment of typical absence seizures in children aged 2 to 12 years (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for IGE. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in IGE. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in IGE. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
JME
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine did not have UK marketing authorisation for use in juvenile myoclonic epilepsy. It had authorisation for monotherapy and adjunctive treatment of focal and GTC seizures, seizures associated with Lennox–Gastaut syndrome, and monotherapy treatment of typical absence seizures in children aged 2 to 12 years (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for monotherapy use in JME. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in JME. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in JME. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
Absence syndromes
Clobazam
At the time of publication, clobazam did not have UK marketing authorisation for use in children younger than 3 years (BNFC). There was insufficient experience of the use of this drug in children younger than 6 years to enable any dosage recommendation to be made (SPC). It did have authorisation for adjunctive therapy for epilepsy, monotherapy under specialist supervision for catamenial (menstruation) seizures (usually for 7–10 days each month, just before and during menstruation), and cluster seizures (BNFC).
Lamotrigine
At the time of publication, lamotrigine had UK marketing authorisation for monotherapy of typical absence seizures for those aged 2–12 years only. There was no authorisation outside this age range (BNF).
Levetiracetam
At the time of publication, levetiracetam did not have UK marketing authorisation for use in absence syndromes. It had authorisation for monotherapy and adjunctive treatment of focal seizures with or without secondary generalisation and adjunctive therapy of myoclonic seizures in patients with JME and GTC seizures (BNF).
Topiramate
At the time of publication, topiramate did not have UK marketing authorisation for use in absence syndromes. It had authorisation for monotherapy and adjunctive treatment of focal seizures and GTC seizures and adjunctive treatment for seizures associated with Lennox–Gastaut syndrome (BNF).
Zonisamide
At the time of publication, zonisamide did not have UK marketing authorisation for use in absence syndromes. It had authorisation for adjunctive therapy for adult patients with refractory focal seizures, with or without secondary generalisation (BNF).
Status epilepticus
Propofol
At the time of publication, propofol did not have UK marketing authorisation for status epilepticus but had authorisation for anaesthesia and sedation. Diprivan 2%, Propofol-Lipuro 2%, and Propoven 2% were not licensed for use in children younger than 3 years; Diprofusor TCI ('target controlled infusion') system was not licensed for use in children (BNFC).
Thiopental sodium
At the time of publication, thiopental sodium did not have UK marketing authorisation for status epilepticus (only if other measures fail, see section 4.8.2 in BNF), by slow intravenous injection (BNF). It is authorised for convulsive states: 75 to 125 mg (3 to 5 ml of a 2.5% solution) given by intravenous infusion (SPC).
Midazolam
At the time of publication, midazolam injection did not have UK marketing authorisation for status epilepticus (BNF, BNFC).
Diazepam
At the time of publication, diazepam did not have UK marketing authorisation for the use of Rectubes and Stesolid Rectal Tubes in children younger than 1 year (BNFC).
Abbreviations: BECTS, benign epilepsy with centrotemporal spikes; BNF, British national formulary; BNFC, British national formulary for children; GTC, generalised tonic–clonic; IGE, idiopathic generalised epilepsy; JME, juvenile myoclonic epilepsy; SPC, summary of product characteristics.

Differences in recommendations for what to do after a first seizure

Recommendations specific for children and young people

The information that should be obtained from the child or young person and/or parent or carer after a suspected seizure is contained in appendix D of the epilepsy NICE guideline.
It is recommended that all children and young people who have had a first non-febrile seizure should be seen as soon as possibleThe Guideline Development Group considered that with a recent onset suspected seizure, referrals should be urgent, meaning that patients should be seen within 2 weeks. by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs.

Recommendations specific for adults

The information that should be obtained from the adult and/or family or carer after a suspected seizure is contained in appendix D of the epilepsy NICE guideline.
It is recommended that all adults having a first seizure should be seen as soon as possible by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs.

Differences in recommendations when diagnosing epilepsy

Recommendations specific for children and young people

The diagnosis of epilepsy in children and young people should be established by a specialist paediatrician with training and expertise in epilepsy.

Recommendations specific for adults

The diagnosis of epilepsy in adults should be established by a specialist medical practitioner with training and expertise in epilepsy.

Recommendations on where to perform investigations for children

All investigations for children should be performed in a child-centred environment.

Differences in recommendations for using an EEG when diagnosing epilepsy

Recommendations specific for children and young people

An electroencephalogram (EEG) should be performed only to support a diagnosis of epilepsy in children and young people. If an EEG is considered necessary, it should be performed after the second epileptic seizure but may, in certain circumstances, as evaluated by the specialist, be considered after a first epileptic seizure.
In children and young people, a sleep EEG is best achieved through sleep deprivation or the use of melatonin.

Recommendations specific for adults

An EEG should be performed only to support a diagnosis of epilepsy in adults in whom the clinical history suggests that the seizure is likely to be epileptic in origin.

Differences in recommendations for the use of neuroimaging when investigating the cause of epilepsy

Recommendations specific for children and young people

Computed tomography (CT) should be used to identify underlying gross pathology if magnetic resonance imaging (MRI) is not available or is contraindicated, and for children or young people in whom a general anaesthetic or sedation would be required for MRI but not CT.

Differences in recommendations for the use of blood tests and other investigations when investigating the cause of epilepsy

Recommendations specific for children and young people

In children and young people, other investigations, including blood and urine biochemistry, should be undertaken at the discretion of the specialist to exclude other diagnoses, and to determine an underlying cause of the epilepsy.

Recommendations specific for adults

In adults, appropriate blood tests (for example, plasma electrolytes, glucose, calcium) to identify potential causes and/or to identify any significant comorbidity should be considered.

Differences in recommendations for using an ECG when diagnosing epilepsy

Recommendations specific for children and young people

In children and young people, a 12-lead electrocardiogram (ECG) should be considered in cases of diagnostic uncertainty.

Recommendations specific for adults

A 12-lead ECG should be performed in adults with suspected epilepsy.

Differences in recommendations when starting treatment AEDs

Recommendations specific for children and young people

Anti-epileptic drug (AED) therapy in children and young people should be initiated by a specialist.

Recommendations specific for adults

AED therapy should be initiated in adults on the recommendation of a specialist.

Differences in recommendations for continuing treatment with AEDs

Recommendations specific for children and young people

Regular blood test monitoring in children and young people is not recommended as routine, and should be done only if clinically indicated and recommended by the specialist.

Recommendations specific for adults

Regular blood test monitoring in adults is not recommended as routine, and should be done only if clinically indicated.

Recommendations for referral to tertiary care that are specific for children

In children, the diagnosis and management of epilepsy within the first few years of life may be extremely challenging. For this reason, children with suspected epilepsy should be referred to tertiary services early, because of the profound developmental, behavioural and psychological effects that may be associated with continuing seizures.

Differences in recommendations for the use of psychological interventions

Recommendations specific for children and young people

Psychological interventions (relaxation, cognitive behaviour therapy) may be used in children and young people with drug-resistant focal epilepsy.

Recommendations specific for adults

Psychological interventions (relaxation, cognitive behaviour therapy, biofeedback) may be used in conjunction with anti-epileptic drug (AED) therapy in adults where either the person or the specialist considers seizure control to be inadequate with optimal AED therapy. This approach may be associated with an improved quality of life in some people.

Differences in recommendations for the use of the ketogenic diet

Recommendations specific for children and young people

Refer children and young people with epilepsy whose seizures have not responded to appropriate anti-epileptic drugs (AEDs) to a tertiary paediatric epilepsy specialist for consideration of the use of a ketogenic diet.

Recommendations specific for adults

No recommendation has been made for adults.

Differences in recommendations for treating refractory convulsive status epilepticus

Recommendations specific for children and young people

Administer intravenous midazolamAt the time of publication (January 2012), this drug did not have UK marketing authorisation for this indication and/or population (see Licensing indications for details). Informed consent should be obtained and documented in line with normal standards in emergency care. or thiopental sodium to treat children and young people with refractory convulsive status epilepticus. Adequate monitoring, including blood levels of anti-epileptic drugs (AEDs), and critical life systems support are required. See also the suggested protocols in appendix F of the epilepsy NICE guideline.

Recommendations specific for adults

Administer intravenous midazolam, propofol or thiopental sodium to treat adults with refractory convulsive status epilepticus. Adequate monitoring, including blood levels of AEDs, and critical life systems support are required. See also the suggested protocols in appendix F of the epilepsy NICE guideline.

Differences in recommendations for conducting a review

Recommendations specific for children and young people

Children and young people should have a regular structured review with a specialist.
For children and young people, the maximum interval between reviews should be 1 year, but the frequency of reviews should be determined by the child or young person's epilepsy and their wishes and those of the family and/or carers. The interval between reviews should be agreed between the child or young person, their family and/or carers as appropriate, and the specialist, but is likely to be between 3 and 12 months.

Recommendations specific for adults

Adults should have a regular structured review with their GP, but depending on the person's wishes, circumstances and epilepsy, the review may be carried out by the specialist.
For adults, the maximum interval between reviews should be 1 year but the frequency of review will be determined by the person's epilepsy and their wishes.
Adults should have regular reviews. In addition, access to either secondary or tertiary care should be available to ensure appropriate diagnosis, investigation and treatment if the person or clinician view the epilepsy as inadequately controlled.
Adults with well-controlled epilepsy may have specific medical or lifestyle issues (for example, pregnancy or drug cessation) that may need the advice of a specialist.

Glossary

Seizures characterised by behavioural arrest associated with generalised spike wave activity on EEG.
The extent to which the person's behaviour matches the prescriber's recommendations. Adherence emphasises the need for agreement and that the patient is free to decide whether or not to adhere to the doctor's recommendation.
Where a medication is added to a first-line anti-epileptic drug (AED) for combination therapy.
The cause or origin of a disease or disorder as determined by medical diagnosis.
Aged 18 years and older.
(AED) Medication taken daily to prevent the recurrence of epileptic seizures.
Generalised seizures characterised by sudden onset of loss of muscle tone.
An episode in the course of an illness.
The initial set of measurements at the beginning of a study (after run-in period where applicable), with which subsequent results are compared.
(BECTS) An epilepsy syndrome of childhood (5–14 years) characterised by focal motor and/or secondarily generalised seizures, the majority from sleep, in an otherwise normal individual, with centrotemporal spikes seen on EEG.
Someone other than a healthcare professional who is involved in caring for a person with a medical condition.
An epilepsy syndrome with an age of onset of 4–9 years, characterised by frequent absence seizures associated with 3 Hz spike wave activity on EEG.
Aged 28 days to 11 years.
Aged 28 days to 11 years.
The description of the history and presentation of the clinical condition to the assessing medical team.
A healthcare professional providing direct patient care (for example, doctor, nurse or physiotherapist).
Co-existence of more than one disease or an additional disease (other than that being studied or treated) in a person.
This is a recent term, the meaning of which has changed. It was initially applied to the consultation process in which doctor and patient agree therapeutic decisions that incorporate their respective views, but now includes supporting patients in medicine-taking as well as communication when prescribing. Concordance reflects social values but does not address medicine-taking and may not lead to improved adherence.
(CSWS) An epilepsy syndrome with childhood onset, characterised by a plateau and regression of cognitive abilities associated with dramatic increase in spike wave activity in slow wave sleep (> 85% of slow sleep). There may be few seizures at presentation.
When a convulsive seizure continues for a prolonged period (longer than 5 minutes), or when convulsive seizures occur one after the other with no recovery between. Convulsive status epilepticus is an emergency and requires immediate medical attention.
The prescribed amount of a drug to be taken, including the size and timing of the doses.
Previously known as severe myoclonic epilepsy of infancy. An epilepsy syndrome with onset in infancy, characterised by initial prolonged, typically lateralised, febrile seizures, subsequent development of multiple seizure types including myoclonic, absence, focal and generalised tonic–clonic seizures, with developmental plateau or regression.
(ECG) A test that records the heart's electrical activity.
(EEG) An investigation that involves recording the electrical activity of the brain. Electrodes are attached to standardised points on the person's head with collodion. Recordings are usually taken across two points.
A transient occurrence of signs and/or symptoms, the result of a primary change to the electrical activity (abnormally excessive or synchronous) in the brain.
A distinctive disorder identifiable on the basis of a typical age of onset, seizure types, specific EEG characteristics, and often other features. Identification of epilepsy syndrome has implications for treatment, management and prognosis.
Seizures that originate within networks limited to one hemisphere, discretely localised or more widely distributed. Replaces the terms partial seizure and localisation-related seizure.
Seizures that originate in, and rapidly engage, bilaterally distributed networks. Such bilateral networks can include cortical and subcortical structures but do not necessarily include the entire cortex.
A seizure of sudden onset involving generalised stiffening and subsequent rhythmic jerking of the limbs, the result of rapid widespread engagement of bilateral cortical and subcortical networks in the brain.
With reference to epilepsy – the epilepsy is, as best as understood, the direct result of a known or presumed genetic defect(s) in which seizures are the core symptom of the disorder.
Description or history of ictal events (seizures).
A syndrome that is only epilepsy, with no underlying structural brain lesion or other neurological signs or symptoms. These are presumed to be genetic in aetiology and are usually age dependent.
(IGE) A well-defined group of disorders characterised by typical absences, myoclonic and generalised tonic–clonic seizures, alone or in varying combinations in otherwise normal individuals. The EEG is also characteristic, demonstrating a distinct pattern of generalised polyspike wave discharges and/or generalised spike wave. Presumed to have a genetic aetiology. The new classification of the International League Against Epilepsy (ILAE, 2010) suggests the terminology should change to genetic generalised epilepsy (GGE).
A specific seizure type presenting in the first year of life, most commonly between 3 and 9 months. Spasms are brief axial movements lasting 0.2–2 seconds, most commonly flexor in nature, involving flexion of the trunk with extension of the upper and lower limbs. They are occasionally referred to as 'salaam seizures'.
Healthcare action intended to benefit the patient, for example, drug treatment, surgical procedure or psychological therapy.
An epilepsy syndrome with an age of onset of 9–13 years characterised by absence seizures, associated with 3–4 Hz spike wave on EEG. Generalised tonic–clonic seizures may occur.
(JME) An epilepsy syndrome with an age of onset of 5–20+ years (peak 10–16 years) characterised by myoclonic seizures that most commonly occur soon after waking. Absence and generalised tonic–clonic seizures may occur in between 50 and 80% of people with JME. EEG demonstrates 3–6 Hz generalised polyspike and wave activity, with photosensitivity in more than 30% of people.
A specific diet that is high in fat but low in carbohydrates and protein.
(LKS) A very rare epilepsy syndrome with an age of onset of 3–6 years characterised by loss of language (after a period of normal language development) associated with an epilepsy of centrotemporal origin, more specifically bitemporal spikes on EEG with enhancement in sleep or continuous spike and wave during slow sleep.
Epilepsy with an age of onset in mid-childhood to adolescence with frequent brief seizures characterised by initial visual hallucinations, ictal blindness, vomiting and post-ictal headache. EEG typically shows interictal occipital spikes attenuated by eye opening.
An epilepsy syndrome with an age of onset of 3–10 years characterised by multiple seizure types (including atonic, tonic, tonic–clonic and atypical absence seizures), cognitive impairment and specific EEG features of diffuse slow spike and wave (< 2 Hz) as well as paroxysmal fast activity (10 Hz or more) in sleep.
Use of a single drug in treatment.
(MAE) Also known as Doose syndrome. An epilepsy syndrome with an age of onset of 18–60 months, characterised by different seizure types with myoclonic and myoclonic-astatic seizures seen in all, causing children to fall. The EEG shows generalised spike/polyspike and wave activity at 2–6 Hz.
Sudden brief (< 100 ms) and almost shock-like involuntary single or multiple jerks due to abnormal excessive or synchronous neuronal activity and associated with polyspikes on EEG.
A deficiency or impairment of the nervous system.
A change in mental status or behaviour from baseline, associated with continuous seizure activity on EEG, which is also seen to be a change from baseline.
(NEAD) A disorder characterised by episodes of change in behaviour or movement, not caused by a primary change in electrical activity of the brain. Movements are varied, and the attacks can be difficult to differentiate from epileptic seizures.
Aged 65 years or older.
Epilepsy syndrome presenting in early childhood (mean 4–7 years) with rare seizures that are prolonged. Characterised by autonomic features including vomiting, pallor and sweating followed by tonic eye deviation, impairment of consciousness with possible evolution into secondary generalisation. Prognosis is excellent and treatment often unnecessary.
Pharmacokinetics is a term used to describe the way in which a drug is processed by the body, influencing absorption, metabolism, distribution and excretion.
Multiple different drugs used in a patient's treatment, which could include anti-epileptic drugs (AEDs).
Two or more medications used in combination therapy. The pathway specifically refers to anti-epileptic drugs (AEDs).
A probable course or outcome of a disease. Prognostic factors are patient or disease characteristics that influence the course of a disease. Good prognosis is associated with a low rate of undesirable outcomes; poor prognosis is associated with a high rate of undesirable outcomes.
A combination of a person's physical, mental and social wellbeing; not just the absence of disease.
For children and young people: a paediatrician with training and expertise in epilepsy. For adults: a medical practitioner with training and expertise in epilepsy.
(SUDEP) Sudden, unexplained, witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomic cause for death.
A brief lapse in consciousness caused by transient reduction in blood flow to the brain. May be caused by many different factors, including emotional stress, vagal stimulation, vascular pooling in the legs, diaphoresis, or sudden change in environmental temperature or body position.
An adult neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.
A paediatric neurologist who devotes the majority of their working time to epilepsy, is working in a multidisciplinary tertiary referral centre with appropriate diagnostic and therapeutic resources, and is subject to regular peer review.
Specialist care delivery unit, to which people may be referred from secondary care.
Tonic seizures are epileptic seizures characterised by abrupt generalised muscle stiffening possibly causing a fall. The seizure usually lasts less than a minute and recovery is rapid.
Tonic–clonic seizures are epileptic seizures characterised by initial generalised muscle stiffening, followed by rhythmical jerking of the limbs, usually lasting a few minutes. The person may bite their tongue and may be incontinent. They may feel confused or sleepy afterwards, and take a while to recover fully.
An epileptic seizure characterised by initial generalised muscle stiffening, followed by rhythmical jerking of the limbs, usually lasting a few minutes. The person may bite their tongue and may be incontinent. They may feel confused or sleepy afterwards, and take a while to recover fully.
Aged 12 to 17 years.
Aged 12 to 17 years.

Child, young person or adult presents with a suspected seizure

Child, young person or adult presents with a suspected seizure

Diagnosing epilepsy and supporting investigations

View the 'Diagnosing epilepsy and supporting investigations' path

Non-epileptic attack disorder suspected

Non-epileptic attack disorder suspected

Non-epileptic attack disorder suspected

Where non-epileptic attack disorder is suspected, refer to psychological or psychiatric services for further investigation and treatment.

Using EEG to evaluate non-epileptic attack disorder

Provocation by suggestion may be used in the evaluation of non-epileptic attack disorder. However, it has a limited role and may lead to false-positive results in some people.
For other recommendations on using electroencephalogram (EEG) when investigating epilepsy, see EEG in this pathway.

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Epilepsy diagnosed

Epilepsy diagnosed

Information about epilepsy

Information about epilepsy

Information about epilepsy

Giving information about epilepsy

Everyone providing care or treatment for children, young people and adults with epilepsy should be able to provide essential information.
Provide information in formats, languages and ways that are suited to the child, young person or adult's requirements. Consideration should be given to developmental age, gender, culture and stage of life of the person.
Healthcare professionals have a responsibility to educate others about epilepsy so as to reduce the stigma associated with it. Provide information about epilepsy to all people who come into contact with children, young people and adults with epilepsy, including school staff, social care professionals and others.

Information to provide

Give to the person and their families and/or carers, and ensure access to sources of, information about (where appropriate):
  • epilepsy in general
  • diagnosis and treatment options (see also diagnosis and treatment in this pathway)
  • medication and side effects (see also anti-epileptic drugs in this pathway)
  • seizure type(s), triggers and seizure control
  • management and self-care
  • risk management
  • first aid, safety and injury prevention at home and at school or work
  • psychological issues
  • social security benefits and social services
  • insurance issues
  • education and healthcare at school
  • employment and independent living for adults
  • importance of disclosing epilepsy at work, if relevant (if further information or clarification is needed, voluntary organisations should be contacted)
  • road safety and driving
  • prognosis
  • sudden death in epilepsy (SUDEP; see below)
  • status epilepticus (see also status epilepticus in this pathway)
  • lifestyle, leisure and social issues (including recreational drugs, alcohol, sexual activity and sleep deprivation)
  • family planning and pregnancy (see also special considerations for women and girls with epilepsy in this pathway)
  • voluntary organisations, such as support groups and charitable organisations, and how to contact them.

When to give information about epilepsy

The time at which this information should be given will depend on the certainty of the diagnosis, and the need for confirmatory investigations.
Give appropriate information before important decisions are made (for example, regarding pregnancy or employment).
Discuss the possibility of having seizures, and provide information on epilepsy before seizures occur, for those at high risk of developing seizures (such as after severe brain injury), with a learning disability, or who have a strong family history of epilepsy. For more information on people with learning disabilities, see people with learning disabilities in this pathway.
Set aside adequate time in the consultation to provide information – revisit in subsequent consultations.
Use checklists to remind children, young people and adults, and healthcare professionals, about information that should be discussed during consultations.
Ensure that the child, young person or adult with epilepsy and their family and/or carers as appropriate knows how to contact a named individual when information is needed. This named individual should be a member of the healthcare team and be responsible for ensuring that the information needs of the child, young person or adult and/or their family and/or carers are met.
If children, young people and adults, and families and/or carers, have not already found high-quality information from voluntary organisations and other sources, inform them of different sources (using the Internet, if appropriate: see, for example, the website of the Joint Epilepsy Council of the UK and Ireland).

Providing information about sudden unexpected death in epilepsy (SUDEP)

Include information on sudden unexpected death in epilepsy (SUDEP) in literature on epilepsy to show why preventing seizures is important. Include tailored information on the person's relative risk of SUDEP as part of the counselling checklist.
The risk of SUDEP can be minimised by:
  • optimising seizure control
  • being aware of the potential consequences of nocturnal seizures.
Take account of the small but definite risk of SUDEP when tailoring information and discussions.
Where families and/or carers have been affected by SUDEP, contact them to offer condolences, invite them to discuss the death, and offer referral to bereavement counselling and a SUDEP support group.

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Classification of epilepsy by seizure type and epilepsy syndrome and investigations to determine the cause of the epilepsy

View the 'Classification of epilepsy by seizure type and epilepsy syndrome and investigations to determine the cause of the epilepsy' path

Managing epilepsy in children, young people and adults

View the 'Managing epilepsy in children, young people and adults' path

Special considerations to be taken when managing epilepsy in specific groups of people

View the 'Special considerations to be taken when managing epilepsy in specific groups of people' path

Treating prolonged or repeated seizures and convulsive status epilepticus

View the 'Treating prolonged or repeated seizures and convulsive status epilepticus' path

Referral to a tertiary epilepsy service

View the 'Referral to a tertiary epilepsy service' path

A summary of where recommendations differ between children and young people and adults when diagnosing and managing epilepsy

A summary of where recommendations differ between children and young people and adults when diagnosing and managing epilepsy

A summary of where recommendations differ between children and young people and adults when diagnosing and managing epilepsy

For differences in the recommendations between children and young people, and adults, at different points of this pathway, see:

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Paths in this pathway

Pathway created: January 2012 Last updated: February 2012

Copyright © 2012 National Institute for Health and Clinical Excellence. All Rights Reserved.

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