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Management of epilepsy in primary care and the community

 - Understanding different seizure types

 - An insight into the treatment and management of epilepsy 

 - Focussing on the role of primary care in managing epilepsy

Epilepsy is the most common neurological condition and has an incidence in the region of 80 cases per 100,000 persons per year.1 Epilepsy has been estimated to affect between 362,000 and 415,000 people in England. In addition, there will be up to another 124,500 people, who have been diagnosed with epilepsy, but in who the diagnosis is incorrect.2 

Diagnosis of epilepsy can be complex and it is recommended that diagnosis is only made by a “specialist in the epilepsies.”3 A specialist is defined as “a medical practitioner with training and expertise in the epilepsies.”  

One in twenty people will have an isolated seizure at some point in their lifetime. A person is considered to have epilepsy if they meet any of the following conditions;

 - At least two unprovoked (or reflex) seizures occurring greater than 24 hours apart.

 - One unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years.

 - Diagnosis of an epilepsy syndrome.4

The patient may also be referred for neuro imaging such as a magnetic resonance imaging (MRI) scan and also an electroencephalogram (EEG).

Active epilepsy is associated with significant risks in terms of mortality and morbidity. Every year, roughly one in every thousand people with epilepsy will die suddenly with no obvious cause. This is what we call sudden unexpected death in epilepsy or SUDEP.5

There are over 40 types of seizures which are classified as focal (partial) seizures or generalised seizures. 

Seizure types


Seizures are classified depending on where in the brain they start.

Focal (partial) seizures start in one area of the brain and may manifest as an unusual sensation, feeling or movement that the patient cannot control. Focal seizures can be brief, lasting seconds or may last for many minutes. Some patients retain awareness during the seizure (simple partial) and can describe a non-existent taste or smell, or feeling extreme emotion, whereas some patients will not be aware at all of what is happening to them (complex partial). During a complex partial seizure, patients may wander with no awareness of where they are going, fiddle with their clothing or even undress. Patients may be observed to be chewing or lip smacking or swallowing repetitively. Onlookers may not be aware that the person is having a seizure. 

During a generalised seizure, the patient will be unaware of what is happening to them. Both hemispheres of the brain will be involved and consciousness will be lost. Generalised seizures include:

 - Absence: momentary loss of consciousness, appearing blank and staring.

 - Atypical absence: momentary loss of consciousness with head or torso slump.

 - Myoclonic jerks: sudden, brief jerk caused by contraction of 

the muscles which if severe, can cause the person to fall or 

drop something.

 -  Atonic: loss of muscle tone causing the person to drop to the floor.

 - Tonic: stiffening of muscles, which if standing, causes the person to fall backwards.

 - Clonic: jerking of the limbs or whole body.

 - Tonic-clonic: consciousness is lost, muscles suddenly contract causing the body to become stiff and fall (tonic stage) followed by rhythmic muscle jerking (clonic stage). Breathing is laboured and cyanosis may occur. The patient may be incontinent, may vomit and may bite their tongue.

Management of epilepsy

Once the diagnosis of epilepsy has been established, a treatment plan can be tailored to the individual. For the majority of patients, pharmacological treatment with an anti-epileptic drug (AED) will be required. Ideally, the patient should be treated with monotherapy but in some cases, the patient may not tolerate the side effects of the medication or find the medication to be ineffective. In this situation, it may be necessary to introduce a second-line agent alongside the current medication and titrate up to a therapeutic level before slowly withdrawing the first medication used. Close monitoring by a healthcare professional during this time is vital to monitor seizure control and any potential side effects. 

Epilepsy is now one of the quality indicators on the quality and outcome framework (QOF) for primary care, and seven out of ten of adults could have their epilepsy completely controlled. According to Epilepsy Action: “One of the key roles of primary care in the shared care of epilepsy is to ensure that a review is offered to these patients at least annually in order to document drug dosage, regimen and side effects; and where appropriate to ensure contraception and pregnancy advice is given.”6

For some patients, they may be able to identify triggers for their seizures. Common triggers include sleep deprivation, stress, physical illness/underlying infection, missed medication, menstruation and the use of alcohol. Encouragement to modify an individual's lifestyle to look at avoiding triggers can often lead to an improvement in seizure control. Psychological interventions as an adjunctive therapy such as cognitive behavioural therapy, biofeedback and relaxation may also be helpful, particularly as depression is common in patients with epilepsy.

If the patient is having prolonged seizures or clusters of seizures, a rescue medication as part of an emergency protocol may be necessary such as buccal midazolam. 

Compliance may be a significant issue for many patients. When prescribing anti-epileptic medication, consideration must be given to the individual's lifestyle, future family planning and potential side effects. For example, sodium valproate has a high teratogenic risk to the unborn foetus and is not the drug of choice in women of childbearing age. Enzyme inducing anti-epileptic medications may interact with some forms of hormonal contraceptives and emergency contraceptives and make them ineffective. 

Women with epilepsy should be referred as soon as possible to an epilepsy service for pre-conceptual counselling if planning a pregnancy. Adjusting medication can take a long time and a thorough discussion regarding the risk of congenital malformations, risk of seizures during pregnancy and the possibility of SUDEP if medication is stopped abruptly should be highlighted.  It is recommended that a high dose of folic acid (5mg) is taken three months pre-conceptually and throughout the duration of any pregnancy. Ideally, this should be discussed within primary care at the patient's annual review. Women should be encouraged to register any pregnancy with the UK Epilepsy and Pregnancy Register. Within Dorset, we are fortunate to have shared care agreements with two of our obstetric units ensuring optimal joint management.

Patients treated with carbamazepine, sodium valproate, topiramate, phenytoin, primidone, or phenobarbital may have an increased risk of osteoporosis with long term treatment. Each patient should be assessed individually and referral for a dual-energy X-ray absorptiometry (DXA) scan may be necessary along with supplementation with vitamin D and calcium. This is particularly important for those patients who may still be having regular seizures and falling, putting them at higher risk of fracture. 

When seizures continue to be refractory to anti-epileptic medication, referral to a tertiary centre for further assessment should be made. Treatment may include surgery, vagal nerve stimulation or the ketogenic diet. 

Case study

Dave is 44 years old. He was referred to the epilepsy specialist nurses for support in managing his epilepsy. Dave has several seizure types including generalised tonic-clonic seizures, absences and complex partial seizures. His seizures started in childhood and have remained refractory to medication ever since. As Dave's seizures increased in frequency, he was unable to work, and he had to move to supported accommodation.

On review in the epilepsy nurse clinic, it was highly apparent that Dave was clinically depressed. His memory was poor due to frequent seizures and he could forget simple tasks such as when to eat. He was fearful of having a seizure while out so had subsequently stopped going out alone. He recalled incidents whereby members of the public had driven around him when he had fallen into the road while having a seizure and also thought that he was drunk when he was having a complex partial seizure and had wandered off. Other residents were wary of him and would avoid him. Dave sustained frequent injuries due to his seizures. He had persistent pain due to chipped and broken teeth which impacted on his ability to eat so he was losing weight. He also complained of chronic back pain. A multi-disciplinary approach was needed. We referred Dave to the dietetic service, maxillofacial department and to a neurologist who specialises in epilepsy. 

Two years on, Dave has obtained continuing healthcare funding allowing him to employ an assistant so that he can access the community. He has had full dental clearance and is awaiting further input to see if he would be eligible for implants. A DXA scan showed that due to the long term use of AEDs, Dave had marked osteoporosis. He is now taking supplementation and has had a successful appointment with the pain clinic to look at ways of managing his chronic pain. He has undergone several drug changes and unfortunately, his seizures persist. Dave is now being considered for vagal nerve stimulation. Finally, at Dave's request, the residents of his accommodation block attended a teaching session on epilepsy given by myself. Subsequently, there is now greater awareness and empathy for Dave's situation and his social network has now developed. 


Epilepsy is a complex long term neurological condition. Primary care plays a crucial role in the management of patients with epilepsy. All patients with epilepsy should be offered an annual structured review to discuss lifestyle and treatment plans. Where seizures persist, referral to secondary care is recommended to obtain optimal treatment. 


1. Shorvon S. Handbook of Epilepsy Treatment. London: Blackwell Publishing; 2005.

2. National Institute for Health and Clinical Excellence (NICE). The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. Manchester 2012.

3. National Institute for Health and Clinical Excellence (NICE). The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. Manchester 2004.

4. International League against Epilepsy (ILAE). The 2014 Definition of Epilepsy: A perspective for patients and caregivers. 2014.

5. SUDEP Action. SUDEP and Epilepsy.

6. Epilepsy Action. Epilepsy: A resource pack for primary care. Leeds: Epilepsy Action; 2012.


SUDEP Action

Epilepsy Action 

Epilepsy Society 

UK Epilepsy and Pregnancy Register