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Epilepsy for pharmacists

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Epilepsy for pharmacists

Our guide for pharmacists working in registered pharmacy premises in the UK, includes information about treatment, seizure types and points to cover with patients taking anti-seizure medication. Co-produced with Medway School of Pharmacy.

What is epilepsy?

Epilepsy is the tendency to have recurrent seizures that start in the brain. It is typically diagnosed after a person has had two or more unprovoked seizures. It is also associated with other cognitive problems including memory issues. In the UK, it affects around 1 in 100 people.

Seizure types

Focal seizures

Around 70% of people with epilepsy experience focal seizures (previously called partial seizures). Focal seizures start in one part of the brain, the ‘focus’. Where in the brain the focus is and how far the seizure activity spreads from the focus, determines the nature of the seizures that occur. 

During focal seizures, a person may be fully aware (focal aware seizures) or, if the abnormal activity spreads to both hemispheres of the brain, then consciousness may become impaired (focal impaired awareness seizures). In some cases, the spread may involve the whole brain and the focal seizure will evolve to a generalised tonic-clonic seizure (focal to bilateral tonic-clonic seizure).

Types of generalised seizures

In generalised onset seizures both halves of the brain are involved from the start. The person will not have a warning that a seizure is starting. There are different types of generalised seizure.

Tonic-clonic seizures

  • The muscles contract and the body goes stiff, the person may cry out, then lose consciousness and fall to the floor, cyanosed.
  • They may bite their tongue, or cheek.
  • The clonic phase follows, and muscles alternate between contraction and relaxation, resulting in jerky movements. 
  • They may be incontinent at this stage.
  • After a few minutes they will go limp, then start to come round, often feeling groggy, with aching head and limbs. Some  people may then want to sleep.

Tonic seizures

  • There is a prolonged loss of consciousness.
  • The person goes stiff and may fall backwards.
  • The person may sustain significant injuries due to falling.

Atonic seizures (drop attacks)

  • There is a prolonged loss of consciousness.
  • The person goes limp from the start and may flop forward if seated.
  • The person may sustain significant injuries as a result of falling.

Myoclonic jerks

  • The loss of consciousness is brief.
  • People have sudden short-lasting jerks which can affect some or all of the body.
  • Seizures of this type often happen in clusters and are most common in the morning. 

Absence seizures

  • These seizures are more common in children than in adults.
  • The child may appear to be daydreaming, look blank and stare, or their eyelids might flutter.
  • The seizures and loss of consciousness are very brief, lasting only a few seconds. 
  • The child may be having hundreds of absence seizures a day meaning they miss key points in lessons and may find following instructions difficult, creating an impression of bad behaviour.

Treating epilepsy

Complete seizure control is possible for up to 70% of patients with the right anti-seizure medication (ASM), previously called anti-epileptic drugs or AEDs. For about 30% of people with epilepsy, ASM does not control seizures satisfactorily. Non pharmacological treatment options may include the following:

Epilepsy and anti-seizure medication (ASM)

NICE states that the specialist should ‘develop an individualised anti-seizure medication treatment strategy with the  person, and their family and carers if appropriate, taking into account: sex, age, seizure type, epilepsy syndrome, whether treatment is needed, risks and benefits of anti-seizure medications, including their importance in reducing the risk of epilepsy-related death, possible interactions with any other medicines taken, any comorbidities, the preferences of the person, and their family or carers if appropriate’.  

  • There are around 30 ASMs available.
  • ASM is not a ‘cure’ for epilepsy as it does not affect the underlying cause. 
  • ASM is introduced gradually and increased until seizures are controlled or adverse effects are unacceptable. 
  • Ideally individuals should be treated with a single ASM (monotherapy) wherever possible.

f initial treatment is unsuccessful, monotherapy using another drug may be tried. The changeover period needs to be monitored, so the replacement drug is built up to an adequate or maximum tolerated dose before the first drug is tapered off slowly. Polytherapy (using two or more ASMs) may be necessary for some individuals.

For more about indications for use, dosing and side effects see the British National Formulary (BNF) and British National Formulary for Children (BNFC).

Factors affecting adherence to ASM

Memory problems

Because epilepsy is caused by a problem in the brain, other cognitive issues, especially memory problems, commonly occur. The effect of seizures and, in some cases, the effect of ASM, can also interfere with memory. Medication reminders, alarms, or other compliance aids may help some people. 

Consistency of supply

Differences in bioavailability between products can be an issue for some ASM and may result in an adverse drug reaction and/or changes in effectiveness. The Medicines and Healthcare products Regulatory Agency (MHRA) has issued guidance on when epilepsy medication should be prescribed by brand.

Monitoring AEDs

Routine blood monitoring is not usually required if the dose is stable, seizure control is good and the patient is side effect free. However monitoring is recommended:

  • where toxicity is suspected;
  • where pharmacokinetic interactions are suspected;
  • where other conditions may affect drug levels, e.g. pregnancy or concomitant illness;
  • where an adjustment to the dose of phenytoin is required; or
  • to confirm potential non-adherence.

Monitoring can be useful where the dose is stable to establish a benchmark.

Points to cover with patients taking AEDs

ASM is taken as an ongoing preventative treatment. It does not ‘cure’ epilepsy and it is not a ‘course of treatment’. ASM aims to stop seizures happening, so it needs to be taken every day, continuously. ASM is usually taken for a few years, and for many people for life.

If someone has been seizure free for a few years, they might talk to their specialist about slowly withdrawing their medication. 

It is beneficial to take ASM at about the same time each day. This helps to keep the level of drugs in the body constant, and establishes a routine to remember to take them. Stopping or changing ASM can result in seizures happening.

Side effects won’t necessarily happen, and don’t have to be ‘put up with’. However, many patients with epilepsy do live with serious side effects because they have been able to improve seizure control. If someone is having side effects that are intolerable, their prescribing doctor (usually their neurologist) may suggest changing to a different ASM. 

This can be a reason why patients are reluctant to mention side effects, for fear of a change to their medication and worsening of seizure control. You can tell them that their specialist may suggest a different ASM which may work just as well and that any change-over will be carefully managed to try to avoid seizure re-emergence. 

Specific issues for girls and women

In March 2018 MHRA issued strengthened guidance that sodium valproate 'must no longer be used in any woman or girl able to have children unless she has a pregnancy prevention plan in place. This is designed to make sure patients are fully aware of the risk and the need to avoid becoming pregnant.'

MHRA advises that 'If valproate is taken during pregnancy, up to 4 in 10 babies are at risk of developmental disorders, and approximately 1 in 10 are at risk of birth defects.'

There are also links between hormones and puberty, contraception, pregnancy, and the menopause. For example, women (who are not planning a pregnancy) need to be using a contraceptive that does not interact with their ASM. Enzyme-inducing drugs reduce the effectiveness of the pill.

Women taking enzyme-inducing ASM are also advised against using the progestogen implant. In addition, the ASM lamotrigine can be affected by the the oestrogen in the combined hormonal contraceptive pill, leading to possible lowering of lamotrigine levels and loss of seizure control. 

Contraceptive injections, such as Depo-Provera are recommended for women with epilepsy as they have good efficacy  (if replaced regularly) and do not interact with ASM. 

Women of child bearing age taking valproate are advised to use a ‘highly effective’ method of contraception which is defined as a method that is user independent.

 For this group of patients, Depo-Provera is only considered ‘highly effective’ if the woman has the injection without fail every 12 weeks. 

Intrauterine devices (IUDs) or Intrauterine systems (IUSs) are effective for women taking ASM, including enzyme-inducers, and are considered ‘highly effective’ for women taking valproate.  

Women taking enzyme-inducing ASM need to have higher doses of emergency hormonal contraception. Only levonorgestrel is recommended for this group

Planning a pregnancy

For women planning a pregnancy, preconceptual care from a specialist is essential. Most ASM has teratogenic potential, but strengthened guidance has been issued on sodium valproate. All health care professionals should ensure that women planning a pregnancy have received preconception counselling.

Emergency medication

Buccal midazolam can be given in status epilepticus,** a medical emergency where a person has prolonged or repeated seizures that last for 5 minutes or more without a complete recovery of consciousness. In the UK there are two products containing midazolam for buccal use, Buccolam® and Epistatus®. Buccolam has a licence for children from 3 months to the age of 18 and comes in pre-filled syringes. Epistatus also has a licence for children from age 10 to less than 18 years and is available as a multi-dose bottle and pre-filled single-dose syringe.Other unlicensed named specials are available. Pharmacists should note that Buccolam and Epistatus contain different salts of midazolam and that products are available in different strengths. Buccolam is 10mg/2mL and Epistatus and 'specials' are 10mg/1mL. Pharmacists need to ensure that the appropriate product is given.

The prescription should be written by brand and that brand only given, as the carer will have been trained to administer that particular product. Substitutions should only be made after consultation with the prescriber. 

Prognosis and complications

People who have uncontrolled seizures have an increased mortality rate. This relates to an increased risk of accidents, and sudden unexpected death in epilepsy (SUDEP). About 1000 people die each year from epilepsy related causes. 
People with uncontrolled epilepsy also have an increased risk of mental health problems, in particular depression. Epilepsy is also associated with significant social problems, including unemployment, problems with relationships, memory, stigma, and isolation.

When to refer a patient with epilepsy

There may be some specific issues that require a patient with epilepsy to be referred to a GP or specialist including:

  • if seizures become worse or more frequent or if a patient is not under current review with a specialist;
  • if there are any signs of adverse drug reactions; or
  • if a patient is pregnant or planning a pregnancy.

Getting help

Epilepsy Society provides support for people with epilepsy, their families, friends and carers (and provides resources for professionals).

Our confidential epilepsy helpline provides information and support. Epilepsy Society has information about the care and treatment that individuals with epilepsy can expect, including access to specialist services and appropriate treatment options. 


**  Epilepsies in children, young people and adults. Published April 2022.

Information updated: May 2022

Want to know more?

Download our Epilepsy for pharmacists factsheet (pdf 804KB)

For printed copies, please call our Helpline on 01494 601 400.




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