Background
Epilepsy can start at any age, but onset is usually in childhood or in people over the age of 60.
In the UK, the prevalence of epilepsy is estimated to be 5–10 cases per 1000. It is more common in people with learning disabilities.
Symptoms
The main symptom of epilepsy is epileptic seizures. Seizures can affect people in different ways, depending on which part of the brain is affected.
Common symptoms include:
- Going stiff and collapsing
- Uncontrollable jerking and shaking (a fit)
- Losing awareness and staring blankly into space
- Strange sensations, e.g. a ‘rising’ feeling in the tummy, unusual smells or tastes, a tingling feeling in the arms or legs
All people suspected of having a first epileptic seizure should be urgently referred to a specialist for confirmation of the diagnosis.
Ensure that all children and young people with epilepsy are reviewed by an epilepsy specialist at least once a year.
Annual review appointments
NICE guidelines state that a routine review of all people with epilepsy should be made in primary care at least once a year to assess:
- seizure control, adverse effects, appropriate antiepileptic drug prescribing and compliance with treatment.
- the impact of epilepsy on work, education, and leisure activities, and how to manage risks.
- carers' skills in managing seizures.
- contraception needs and pregnancy planning information needs, if appropriate.
- entitlement to drive (for details, see box ➡️)
(The full guide can be accessed here: Assessing fitness to drive: a guide for medical professionals)
Click link for → Table of Regulations
Appointment overview
- Assess seizure control → query seizure frequency/severity, and any changes since last review. For people who have more than one type of seizure, identify frequency of each seizure type.
- If seizures are uncontrolled → seek specialist advice.
- For seizure recurrence after a period of remission → refer for urgent appointment (2WW) for specialist assessment.
- Ask about how epilepsy is affecting the patient's daily functioning and quality of life → provide information/support for patient, family and/or carers (see below).
- Assess for any symptoms/signs of anxiety, depression, and memory or cognitive deficit, and manage appropriately (see also Depressive Disorders Anxiety Disorders).
- Ask about the impact of epilepsy on work, educational, and leisure activities; any associated difficulties or risks, and how they manage them.
- Check there is appropriate supervision during water activities, (e.g., swimming, bathing, or showering) to reduce the risk of accidental drowning.
- Ensure that any carer for a person with epilepsy is aware how to recognize/manage a seizure, including when and how to give buccal midazolam or rectal diazepam for prolonged or recurrent seizures, if appropriate.
Review medications
Med reviews can be carried out by the pharmacy team if the patient’s epilepsy is stable.
If patient is having frequent seizures and medication is not managing them → refer to GP or specialist care.
- Review adverse effects/compliance with antiepileptic drug treatment.
- Ensure the patient and family/carers understand the importance of compliance to reduce the risk of seizures and sudden unexpected death in epilepsy (SUDEP; see Sudden Unexpected Death in Epilepsy - SUDEP | SUDEP Action).
- Consider whether the person should be maintained on a specific manufacturer's product by prescribing by antiepileptic drug brand name, or using the generic drug name and manufacturer name, if appropriate, when re-authorizing repeat prescriptions (see box).
- Consider measuring blood levels of antiepileptic drugs if drug toxicity or non-compliance is suspected. Seek specialist advice for blood testing in children.
- For people whose seizures are controlled when taking long-term carbamazepine, phenytoin, primidone, phenobarbital, or sodium valproate:
- Advise about the increased risk of osteoporosis.
- Assess patient’s risk of osteoporosis.
- Offer lifestyle/dietary advice and calcium and vitamin D supplementation, if appropriate.
- For women of childbearing age → advise on contraception options (see our page Contraception), the risks of antiepileptic drugs during pregnancy, and how to reduce these risks when planning a pregnancy (see Pre-Conception Advice ).
Valproate and Topiramate have important and specific data and instructions regarding their use in women of childbearing age and men. Consult the portal page Valproate & Topiramate for these details before concluding with a patient using either of these medications.
N.B. this advice relates only to antiepileptic drugs being used for the treatment of epilepsy.
Information and support
NICE Guidelines regarding the effect of epilepsy on daily functioning/quality of life suggest the following supportive considerations.
- Provide tailored information/support to people with epilepsy, and their families or carers if appropriate, according to their individual needs/circumstances.
- Include children and young people in discussions about their information/support needs, and provide information appropriate to their developmental age.
- Take into account the information/support needs of epilepsy patients who are older, have learning disabilities or have complex needs, by:
- giving longer appointments/allowing more time for discussion,
- providing information in different formats (e.g., easy read, large print or audio versions),
- sharing information with/involving family members/carers/advocates, if appropriate.
- Inform the patient and their carers to book an appointment with a GP if there are problems relating to their epilepsy.
- Give advice regarding reducing seizure frequency and risk (see box ➡️).
- Ensure that patients have an up to date emergency management plan (very useful for schools/employers/carers) → known as Seizure Action Plan (see box below for template)
For more detailed information, see Safety advice for people with epilepsy - Epilepsy Action