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NICE CG137- Epilepsies: diagnosis and management (Updated February 2016) contains guidance on the diagnosis and management of the epilepsies in adults, children and young people in primary and secondary care. This section summarises some of this guidance and provides other useful information on epilepsy.
All patients 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. Patients will be seen within two weeks of referral. Treatment is not generally initiated after a single fit.
Essential information on how to recognise a seizure, first aid, and the importance of reporting further attacks should be provided to the patient who has experienced a possible first seizure, and their family/carer/parent as appropriate.
Women of child-bearing potential require special consideration (see Women and girls with epilepsy).
See section 4.8 Antiepileptic drugs
NICE CG137 recommends drug treatment be individualised according to seizure type, epilepsy syndrome, co-medication and co-morbidity, patient's lifestyle, and the preferences of the person, their family and/or carers as appropriate, see full guidance for further details. In clinical practice the type of seizure can be used to guide treatment choice.
Side effect and interaction profiles should direct the choice of drug for the individual patient.
The MHRA issued a strengthened warning that valproate should not be prescribed to female children, female adolescents, women of childbearing potential or pregnant women unless other treatments are ineffective or not tolerated. See MHRA Drug Safety Update (February 2016): Valproate and risk of abnormal pregnancy outcomes: new communication materials.
Despite communications to prescribers in January 2015 and February 2016 on the magnitude of this risk and the actions to take, there is evidence that women are still not aware of the risk. Patient Safety Alerts have now been issued asking all organisations to undertake systematic identification of women and girls taking valproate. See MHRA Drug Safety Update (April 2017): Valproate and developmental disorders: new alert asking for patient review and further consideration of risk minimisation measures.
Different antiepileptic drugs (AEDs) vary considerably in their characteristics, which influences the risk of whether switching between different manufacturers' products of a particular drug may cause adverse effects or loss of seizure control. See MHRA Drug Safety Update - Antiepileptic drugs: new advice on switching between different manufacturers' products for a particular drug (November 2013). See 4.8.1 Control of the epilepsies.
An epilepsy specialist should:
The following guidance summarises 1st line and 2nd line treatment options outlined in NICE CG137 based on seizure type. Consult NICE guidance for 3rd line and adjunct treatments.
See section 4.8 Antiepileptic drugs
Primary generalised tonic-clonic
Tonic or atonic
Patients experiencing convulsive seizures which last longer than 5 minutes or three or more seizures in an hour require prompt care and treatment.
Treatment options see section 4.8 Antiepileptic drugs
Continuing AED therapy should be planned by a specialist. If the management is straightforward, then continuation may be in primary care.
Regular blood level monitoring should only be carried out if clinically indicated, e.g. detection of non-adherence, suspected toxicity, adjustment of phenytoin dose, specific clinical conditions such as organ failure.
Some specific routine blood tests should be conducted; clotting studies before surgery in patients taking valproate, FBC, U&E, LFT, vitamin D and bone metabolism in patients taking enzyme inducing drugs and valproate should be conducted every 2-5 years. Asymptomatic minor abnormalities are not necessarily an indication to change medication.
Available data suggest that long-term use of carbamazepine, phenytoin, primidone and sodium valproate is associated with decreased bone mineral density that may lead to osteopenia, osteoporosis, and increased fractures in at-risk patients. Vitamin D supplementation should be considered for at-risk patients who are taking the above medicines and phenobarbital long-term. Patients taking AEDs should receive dietary and other lifestyle advice to minimise the risk of osteoporosis.
Appendix H of the full NICE CG137 provides tables for the prognosis of remission of seizures
The decision to withdraw medication should be taken by the individual/carer and the specialist after full discussion of the risks and benefits of withdrawal. Withdrawal should be managed by, or be under the guidance of, the specialist.
NICE guidance on withdrawing AEDs:
In order to enable informed decisions and choice, and to reduce misunderstandings, women and girls with epilepsy and their partners, as appropriate, must be given accurate information and counselling about contraception, conception, pregnancy, caring for children and breastfeeding, and menopause.
Discuss with women and girls of childbearing potential, and their parents and/or carers if appropriate, the risk of AEDs causing malformations and possible neurodevelopmental impairments in an unborn child. Assess the risks and benefits of treatment with individual drugs.
MHRA Drug Safety Update (February 2016): Valproate and risk of abnormal pregnancy outcomes: new communication materials to be used to support discussion of the risks with females of child bearing potential and girls who take valproate.
MHRA Drug Safety Update (April 2017): Valproate and developmental disorders: new alert asking for patient review and further consideration of risk minimisation measures.
The Medicines and Healthcare Products Regulatory Agency's (MHRA) Toolkit on the risks of valproate medicines in female patients, provides resources to ensure female patients are better informed about the risks of taking valproate medicines during pregnancy.
AEDs can interact with hormonal contraceptives; see Contraception Guidance for more information
Epilepsy itself is a condition for which there are no restrictions on the use of contraceptive methods, but restrictions may apply if certain antiepileptic drugs (AEDs) are used.
If a patient is using oral contraception, an AED that does not induce hepatic enzymes is preferable.
Combined hormonal contraceptive (CHC)
When a CHC is given with an enzyme inducing AED the efficiency of the contraceptive is reduced. Other non-hormonal methods of contraception should be used.
AEDs which induce hepatic enzymes
Progestogen only contraception (POP)
POP is not recommended for women taking enzyme inducing AEDs.
Progestogen implants are not suitable for women taking enzyme inducing AEDs.
Women started on an enzyme-inducing AED should be advised to use a reliable contraceptive method unaffected by enzyme inducers (e.g. progestogen-only injectable, Cu-IUD, levonorgestrel-releasing intrauterine system or non-hormonal methods). For advice concerning CHCs and depot progestogens, it is advisable to contact The Centre. Telephone: 01392 284982 or 01392 284983. See also CHC Drug interactions.
All AEDs have potential harmful effects on the unborn child, as does epilepsy. Women and girls with epilepsy need accurate information during pregnancy, and the possibility of status epilepticus and SUDEP should be discussed with all women and girls who plan to stop AED therapy
Pre-conception counselling by a specialist is recommended. To reduce the risk of neural tube defects adequate folate supplements are advised for women before and during pregnancy; to prevent recurrence of neural tube defects, women should receive folic acid 5mg daily. This dose may also be appropriate for women receiving antiepileptic drugs. See section 9.1 Anaemias and some other blood disorders. Those who wish to become pregnant should be referred to an appropriate specialist for advice. Women who become pregnant should be counselled and offered antenatal screening (alpha-fetoprotein measurement and a second trimester ultrasound scan).
Routine injection of vitamin K at birth minimises the risk of neonatal haemorrhage associated with antiepileptics.
The concentration of antiepileptic drugs in the blood can change during pregnancy, particularly in the later stages. The dose of antiepileptics should be monitored carefully during pregnancy and after birth, and adjustments made on a clinical basis.
The care of pregnant women should be shared between the obstetrician and epilepsy specialist. The reporting of the pregnancy to the UK Epilepsy and Pregnancy Register is encouraged (Tel: 0800 389 1248)
Full NICE guidance contains more details of these issues.
Prescribers should consult individual drug advice in the SPC and the BNF (available at https://www.medicinescomplete.com/about/) when prescribing AEDs for women and girls who are breastfeeding. The decision regarding AED therapy and breastfeeding should be made between the woman or girl and the prescriber, and be based on the risks and benefits of breastfeeding against the potential risks of the drug affecting the child.
Patients with epilepsy may drive a motor vehicle (but not a large goods or passenger carrying vehicle) provided that they have been seizure-free for one year or, if subject to attacks only while asleep, have established a 3-year period of asleep attacks without awake attacks. Those affected by drowsiness should not drive or operate machinery.
Anti-epileptics can make patients drowsy or sleepy and cause blurred vision or double vision when starting treatment. Care must be taken if driving or when operating any type of machinery. It is essential that epilepsy as well as sudden disabling attacks of loss, or partial loss, of consciousness is reported to the Driver and Vehicle Authority (DVLA). The DVLA will then make a medical assessment of the illness, asking the patient's doctor(s) where necessary.
For more information, see https://www.gov.uk/epilepsy-and-driving
It is also recommended that the patient informs their insurance company if they are taking these drugs. If they do not, and have an accident, it could affect any insurance cover.