A Practical Guide to Supporting People with Epilepsy

By Rebecca Case and Sinead Blake

This book is a practical guide, with rationale to supporting people with epilepsy. It encompasses epilepsy guidance such as NICE (2012, revised 2019), The Equality Act (2010), the children and families act (2014), current evidence based-practice, and regulatory organisation standards. It is predominantly aimed at nurses and student nurses, especially, those studying learning disability nursing but also residential, respite and supported living services, schools and family carers, to enable them to offer appropriate and evidence-based support to people with epilepsy of all ages.

It is estimated there are approximately 1200 epilepsy related deaths each year in the UK. Many of these are considered to be preventable. High-profile cases have led to an increase in anxiety in people providing services, and greater scrutiny of those services by regulatory bodies. Over the years, the authors have been asked the same questions and witnessed the same misunderstandings andmistakes, by people supporting individuals with epilepsy. So they looked at the common themes and the resources available. It became clear that the information to address these gaps is available, but not easily accessible. There is lots of information in the public domain, however much of it is factual, rather than practical. This book provides practical information and resources with the focus on “what needs to happen”,” how to make it happen” and “who needs to do it”. This book is useful for supporting people with epilepsy wherever they live (both within and outside the United Kingdom).

• Language: English
• Publisher: Springer
• Release date: May 8, 2020
• ISBN: 9783030426750

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© Springer Nature Switzerland AG 2020

R. Case, S. BlakeA Practical Guide to Supporting People with Epilepsyhttps://doi.org/10.1007/978-3-030-42675-0_1

1. What Is Epilepsy?

Rebecca Case¹  and Sinead Blake²

(1)

Department of Paediatrics, Queen Alexandra Hospital, Portsmouth, UK

(2)

Wessex Neurological Centre, Southampton General Hospital, Southampton, UK

Keywords

EpilepsyPrevalenceCauseMisdiagnosisDissociative seizureNEADDiagnosisTestsPrognosis

1.1 What Is Epilepsy?

Historically, epilepsy has been thought about in many different ways. The term epilepsy comes from the ancient Greek language meaning to possess. It was felt the Ancient Greek Gods or supernatural forces were responsible for causing seizures (Smithson and Walker 2012). Later, Hippocrates described epilepsy as an organic disease of the brain, being hereditary as with other diseases. Nowadays most cultures understand it as a neurological disorder of the brain, however some places in the world still view it differently, and may still see it as a mental health condition or even witch craft.

Epilepsy is a neurological condition, which results in someone having recurrent (more than 1), unprovoked epileptic seizures. During a seizure there will be an abnormal increase in electrical activity in the brain. It can happen in one small area (focal) or across the whole brain (generalised) and so can be divided into two main types of epilepsy (focal or generalised epilepsy). The symptoms can present very differently depending on what part of the brain is affected, the cause and the age of the person.

The International League against Epilepsy is an organisation of specialists working together in the field of epilepsy. They developed a practical definition of epilepsy in 2014 (Fisher et al. 2014). They state that epilepsy is a disease of the brain, which is defined by any of the conditions below:

At least two unprovoked (or reflex) seizures occurring over 24 h apart from each other (a reflex seizure is an epileptic seizure which is induced by a stimuli) (WHO 2019).

One unprovoked (or reflex) seizure with the probability of further seizures (a risk of at least 60%). This risk can be increased in certain situations, for example if an underlying cause for the seizures has been found so the likelihood of further seizures is considered high.

Diagnosis of an epilepsy syndrome.

Epilepsy is considered to be resolved if a person has an age dependent syndrome and they are past the relevant age. Or if the person has been seizure free for 10 years and off antiseizure medications for 5 years (Fisher et al. 2014).

There are usually key features to an epileptic seizure including:

Brief

Stereotyped—they look the same for each person

Usually stop on their own (self-limiting)

An Epilepsy Syndrome is when a group of clinical characteristics occur for a person, such as seizure types, age it started, EEG results, genetic factors, prognosis and response to medication.

1.1.1 Not All Seizures Are Due to Epilepsy (Differential Diagnosis)

Many people can have a single, unprovoked seizure and never go on to have a further seizure. This is why epilepsy is diagnosed after more than one unprovoked seizure. Treatment is not usually started until a person has had more than one unprovoked seizure.

People can have seizures which are provoked, often referred to as acute provoked seizures. This can occur due to a number of different acute clinical situations. It can be due to metabolic changes, for example low sodium levels can cause seizures. They may occur after an anaesthetic. Provoked seizures can be due to acute drug or alcohol abuse, or drug or alcohol withdrawal or immediately or in the few hours following a head injury. A febrile convulsion in children is considered an acute seizure. This is not considered to be epilepsy as the seizures are directly related to the provoking factor and would not have occurred without it.

Some conditions can look like seizures but they are actually caused by something else. For example some cardiac problems can look like a seizure, including fainting (Syncope). Sometimes, psychological conditions, such as panic attacks or symptoms such as hallucinations can be misinterpreted as a type of seizure. Migraine symptoms, such as visual disturbances may also appear as a seizure. The most common conditions which are misdiagnosed as epilepsy are syncope and dissociative seizures.

1.1.2 Dissociative Seizures (Also Referred to as Non-epileptic Attack Disorder, Psychogenic Seizures, Organic Seizures, Functional Seizures, Pseudo-Seizures)

Although many terms may be used for this condition, terms such as psychogenic, functional or pseudo-seizures can be unhelpful as they can make it sound as though the individual has control over the attacks.

This is a condition that involves the person experiencing an event similar to an epileptic seizure. However, it is not associated with electrical disturbances in the brain. It is thought that the attacks or seizures are caused by emotional processing difficulties, often due to a stressful or traumatic event, which can be at the time and/or in the past. It is not unusual for people to not be aware of what has caused the dissociative seizures and to find it difficult to accept the diagnosis.

Dissociative seizures can be thought of as a physiological response to stress. Similar to how the body responds to stress in other ways, such as an unsettled stomach (butterflies in the stomach) or blushing. For people with dissociative seizures, the manifestation is in the form of a seizure. Seizures can look similar to epileptic seizures and it can be difficult to distinguish between the two. However, often there are characteristics which allow health care professionals to tell the difference.

The treatment of dissociative seizures is very different to the treatment of epilepsy. It is therefore very important to get the diagnosis right. Antiseizure medications will not help non-epileptic (dissociative) seizures. The main treatment is psychological interventions such as cognitive behavioural therapy (CBT) or counselling. Other strategies such as relaxation techniques and grounding exercises can help with symptom management. Further advice and guidance can be found on the following websites: http://​www.​nonepilepticatta​cks.​info/​ and http://​codestrial.​org. There are also other organisations which provide further information.

1.2 How Common Is Epilepsy?

Epilepsy is one of the most common neurological conditions. Anyone can develop epilepsy at any age. It is estimated that approximately 50 million new cases of epilepsy are diagnosed worldwide each year (WHO 2019). Studies exploring the prevalence of epilepsy worldwide estimate that approximately 6–7 per 1000 people will have active epilepsy (that’s just under 1% of the general population 0.6–0.7%) (WHO 2019). Within the UK it is estimated that approximately 1 in 100 (1%) of the general population have epilepsy (Epilepsy Action 2018; Specialised Commissioning Team 2018). Many people will become seizure free on medication but approximately one-third of patients (30%) will remain uncontrolled (WHO 2019). This is called refractory or treatment resistant epilepsy.

1.2.1 Patterns

Epilepsy is more common in children and older people. In developed countries the incidence rates in children is falling (WHO 2019). This may be due to better care during pregnancy and with obstetric care. The incidence of epilepsy in older people is increasing as people are living longer, and living with neurological conditions, cerebrovasular disease or after brain injury (WHO 2019).

Epilepsy is a condition which is experienced worldwide but is more common in low income countries and commonly in tropical areas (Moog et al. 2017). It appears to be more commonly seen in developing countries that are less advanced in terms of medical interventions. This is thought to be due to a higher risk of infections, higher risk for complications for children at birth or trauma which could result in injury to the brain (WHO 2019).

Gender, ethnicity and culture do not appear to be a significant factor in whether a person develops epilepsy, although, some studies suggest a slightly higher prevalence in males. However, this is not thought to be significant and may be due to factors such as males being exposed to risk factors for epilepsy or due to women concealing the condition for socio-cultural reasons (WHO 2019).

The prevalence of epilepsy is much higher in people with learning disabilities. The prevalence of epilepsy within a general sample of people with learning disabilities is approximately one in five (Robertson et al. 2015). It is clear from studies that the prevalence rate is less for people with mild disability and increases with more severe learning disability (Robertson et al. 2015). This suggests that the underlying changes in the brain, associated with the learning disability make it more likely for the person to develop epilepsy.

It must be noted that studies looking into incidence and prevalence of epilepsy can be difficult to conduct and vary considerably worldwide. This makes it difficult to get clear figures.

1.2.2 Causes

There are many different reasons why someone might develop epilepsy. For many people with epilepsy, there is no known cause. However, as science and technology is improving, it may be that more causes of epilepsy are understood and identified. Understanding the cause of the epilepsy may help the specialist make decisions about treatments and also help predict prognosis. The main causes can be divided into key areas: genetic, symptomatic and unknown (idiopathic).

1.2.2.1 Genetic Causes

This is where certain genes have been identified as part of the epilepsy disorder. Sometimes the characteristics of the person’s epilepsy (seizure types, patterns of seizures, family history and EEG results) can indicate a genetic type of epilepsy. If someone has a type of epilepsy which is genetic, then it does not necessarily mean it is inherited. There may be a higher risk of it running through families, but this will depend on the specific condition.

1.2.2.2 Symptomatic

This is where there has been an underlying change within the brain, which is causing the person to have epileptic seizures. Examples of this include: head injury, hypoxia (lack of oxygen to the brain), tumours, stroke, brain infections (such as, meningitis and encephalitis), and congenital malformations (brain defects).

For individuals with this type of epilepsy, the seizures are likely to start in the area of brain which has been affected. This means that they are likely to experience focal seizures (where a small part of the brain is affected from the start of the seizure), although focal seizures may quickly develop into generalised seizures, so it is not always obvious that they are focal. People with learning disabilities will often have a symptomatic cause for their seizures.

1.2.2.3 Unknown

Many people with epilepsy will not have an identifiable cause. There will be no clear reason why the person has developed epilepsy. A person with a normal brain scan and normal EEG can still have epilepsy.

1.3 Diagnosis

When someone first presents with a seizure or seizures, they will usually be seen by a Specialist, in an outpatient’s clinic. This may be a Neurologist or a paediatrician and possibly a specialist nurse. At this appointment, the clinician will try to find out exactly what happened during the seizure. An account of what happened from the person and any witnesses is very important to try and establish the correct diagnosis. A diagnosis of epilepsy is made based on this clinical discussion. Tests such as a brain scan and EEG may help to confirm the diagnosis but usually are not enough on their own.

1.3.1 Witness Account

This is very important to help diagnose epilepsy and to get a good understanding of the type of event or seizure a person has. A good description and video footage of what happened before, during and after the seizure is very useful.

If the person has had more than one seizure and they consent, then video recordings are very beneficial to aid diagnosis. These can be shared (with consent) with the specialist team and will help determine the type of event or seizure the person has had.

The specialist may ask certain questions, such as, was the person responsive; were their eyes open or shut; was there any body movement; did they bite their tongue or were they incontinent. They may also ask about timing; how long did the seizure last, how long did it take for the person to recover; what was the first thing they can recall.

1.3.2 Investigations

There are a number of tests which can be used to support a diagnosis of epilepsy. These may include an EEG (Electroencephalography), scans (MRI or CT), and blood tests. Other tests may be completed to rule out (or in) other conditions that can cause seizures. Tests are used to aid a diagnosis but they are generally not diagnostic in themselves.

1.3.2.1 EEG

This involves coming into hospital to have electrodes put onto the person’s head. These are sticky patches with wires attached. They will record the electrical activity in the brain through the scalp. The procedure is not invasive and does not hurt, though it can be mildly uncomfortable and some children and people with learning disabilities may find it difficult to tolerate.

It can be completed for different lengths of time. Usually it is a quick test which will last about 30–60 min. The technician may ask the person to do certain things, such as, look at flashing lights or to breathe into a paper bag. This is to try and provoke seizure activity.

Sometimes an ambulatory/24 h EEG is used. This is a prolonged recording over 24 or 48 h. The person will go into hospital to have the electrodes attached, then go home with them on, then come back to take them off the following day.

Occasionally, people may be asked to go into hospital for a prolonged EEG with video recording. This is called video telemetry. This can be used when the diagnosis is not clear or if surgery is being considered. This will involve staying in hospital for about a week with the electrodes attached to the scalp, and a video recording, so the clinicians can look at what the brain is doing and how this corresponds to what the body is doing (during a seizure). Some hospitals have access to home video telemetry, where this can be done in the home. However, not many hospitals have access to this currently.

What Does It Mean?

The EEG is used to record electrical brain activity. Often if the person is not having a seizure while having the test, it may not show any abnormal activity. This means that the result comes back as normal. A person can still have epilepsy with a normal result.

If the person has a seizure during an EEG and it does not show any abnormal activity, then this is likely to mean that the seizure is not an epileptic seizure. Occasionally, more minor epileptic seizures can occur deep within the brain which can make it hard for any changes to show on a scalp EEG.

Sometimes, if someone has a tendency for seizures or the person has generalised seizures then there may be changes on the EEG, which show up when they are not having a seizure. If this occurs, then the finding would usually support a diagnosis of epilepsy.

1.3.2.2 Radiology: MRI or CT Scans

When someone has first been diagnosed with epilepsy, they may be asked to have a scan of the brain if there is felt to be an underlying cause or they have focal seizures. Sometimes this may happen if they come into hospital as an emergency, due to the seizure. Often, it will be arranged afterwards as an outpatient. Scans are used to rule out (or in) anything in the brain which may have caused the seizure (s).

Things that may be seen on a scan are structural abnormalities of the brain, such as brain tumours, bleeds, swelling or damaged tissue.

Not everyone needs a scan. There is guidance in the NICE guidelines about who should have a scan.

Scans may need to be done under a general anaesthetic if the person is unable to lie still/tolerate the test. This can take time to coordinate.

1.3.2.3 MRI Scan (Magnetic Resonance Imaging)

This type of scan uses powerful magnetic fields and radio waves to produce images of inside the body. The scanner is a large tube which contains strong magnets. Because the scanner contains a magnet, people will be asked to remove all metal. People that can’t remove the metal (for example people with fixed braces, implanted devices, pacemaker or internal surgical metal) may not be able to be scanned using MRI. The person will be asked to lie in the scanner and stay very still during the scan. This usually takes 15–45 min. The scanner can be quite loud inside. The results cannot normally be seen straight away. An MRI scan is often used for epilepsy as the images are more detailed.

1.3.2.4 CT Scan (Computer Topography)

This is a type of scan which uses X-Rays and a computer to show in depth images of inside the brain. Sometimes a special dye (called a contrast) is used to improve the images for both CT