Epilepsy

Epilepsy is a chronic brain disease that can affect people of all ages.¹ Read on to learn about the main types of epileptic seizures, how they affect people, and how epilepsy is diagnosed and treated.

What is epilepsy?

Epilepsy is a condition that affects the brain, people with epilepsy have a tendency to experience frequent seizures. Seizures are caused by a disturbance in the brain’s electrical activity, which temporarily affect how it works. This causes a huge range of symptoms, from becoming stiff or staring blankly into space, to uncontrollable shaking or jerking.²

Epilepsy is considered a ‘spectrum disorder’ because it has numerous causes and several different seizure types and its severity and impact can vary from person to person, with a range of co-existing conditions.³

What are the main types of epilepsy?

There are many types of epilepsy, including focal epilepsy, generalised epilepsy, and combined generalised and focal epilepsies. Doctors will investigate the types of seizures that are experienced and what has caused them to help them to classify the type of epilepsy.⁴

Focal epilepsy – when the seizures come from one half of the brain, such as focal aware seizures and focal impaired awareness seizures (see below for more explanation about the different types of seizures).
Generalised epilepsy – when a range of generalised seizures, which begin in both halves of the brain, are experienced. These may include absence, myoclonic, atonic, tonic, and tonic-clonic seizures.
Combined generalised and focal epilepsy – when both generalised and focal seizures are experienced.

There are over 30 different types of epileptic seizures.³ In some seizures people remain alert, while others can cause loss of awareness. They may cause shaking and jerking or give people unusual sensations.⁵ The main seizure types and their symptoms are covered in detail in the symptoms section below.

How many people have epilepsy?

Epilepsy is one of the most common neurological (meaning it affects the nervous system) conditions in the world. Around 50 million people worldwide have the condition, however it is estimated that up to 70% of people with epilepsy could live seizure-free with the correct diagnosis and treatment.¹

Symptoms

The main symptom of epilepsy is epileptic seizures. These are caused by sudden bursts of electrical activity in the brain which disrupt the function of the brain and mix up its usual messaging. Depending on which part of the brain is involved, seizures can affect people in different ways.²

What are the symptoms of epilepsy?

The main symptom of epilepsy is recurrent seizures⁵ – these are often unpredictable and episodic, which means that they come and go.⁶ However, many people find it helpful to keep track of what happens before each seizure to help them build up a better understanding of any warning signs that are typical for them.⁶

Most people with epilepsy have seizures that last for a short time (less than five minutes) and stop by themselves. But sometimes, a seizure can last longer than five minutes, or multiple seizures can happen with no recovery time in between. This is known as ‘status epilepticus’ and emergency assistance and/or medication may be required to end the seizure as quickly as possible. Make sure you call an ambulance if someone has a seizure that lasts longer than 5 minutes.⁵

Seizures are categorised into focal, which start in one part of the brain, and generalised, which involve all parts of the brain.

Focal seizures

Focal seizures are generally brief, lasting less than two minutes.

Focal aware seizures– during these seizures, the person will not lose consciousness and will be aware that something is happening. Symptoms differ depending on the area of the brain that is affected. They can include a feeling of numbness or tingling, visual disturbances (such as flashing lights) and getting an unusual taste or smell.⁷
Focal impaired awareness seizures – these seizures affect a larger part of one side of the brain than focal aware seizures, so during these seizures your awareness or consciousness is affected.⁸ Your body tends to make involuntary movements, such as lip smacking, arm waving and making random noises.⁵

Generalised seizures

Tonic-clonic seizures – these are the seizures that are typically associated with epilepsy. They have two phases, typically lasting for just a few minutes in total. The first is the ‘tonic’ phase, when you lose consciousness, go stiff and fall to the floor. In the second (‘clonic’) stage, the limbs will jerk repeatedly, and breathing may be affected, which can cause a blue tinge around the mouth. Sometimes you may bite your tongue or lose control of your bladder and bowels.⁵
Absence seizures – this type of seizure usually lasts for up to 15 seconds and mainly affects children. It is where you lose awareness of your surroundings for a short time. Symptoms include fluttering eyelids, slight jerks in the body and staring into space as if in a daydream.⁵
Myoclonic seizures – these seizures are very short, lasting only for a fraction of a second, so consciousness is not generally affected. They cause sudden jerks or twitches that can affect some or all of your body. Myoclonic seizures can be mild or more forceful, like an electric shock.⁵
Tonic seizures – these usually occur while asleep and involve most of the brain. Depending on where in the brain the seizure starts, the muscles in one area of your body or in your entire body will tighten, making your body go stiff. If it happens when you are standing up, you might fall to the floor. These are short and generally last for less than 20 seconds.⁹
Atonic seizures – these only last for a few seconds, but they have a strong effect as they cause all the muscles to go limp. This can cause you to fall to the floor, or your head to drop forwards.¹⁰
Clonic seizures – these typically only last a few minutes and may cause a loss of consciousness. They cause repeated, jerking body movement.⁵

What are the stages of epilepsy?

Epilepsy does not have defined stages; it can come on quite suddenly and can start at any age. Anyone can have a single epileptic seizure, and this does not necessarily mean you have epilepsy.²

Often, epilepsy is a life-long condition, although some types of epilepsy last for a limited time and the seizures will eventually stop.³

What are the early signs of epilepsy?

Usually, seizures are unpredictable, brief, and episodic, which means that they come and go, so it can be difficult to know when to expect them. The signs can also vary for different people, so it’s a good idea to build up a picture of any warning signs that you get with each seizure to help you anticipate and prepare for a seizure. Warning signs may include⁶:

Odd feelings that are hard to describe
Unusual smells, tastes or sensations
Unusual experiences such as feeling detached and the body feeling different
Feeling confused
Forgetfulness
Jerking movements of an arm, leg, or body
Falling or stumbling
Tingling and numbness
Headaches
Feeling sleepy or weak
Unexpectedly losing control of bladder or bowel movements

Focal aware seizures are sometimes called ‘auras’ and are often seen as a warning that a tonic-clonic seizure is going to happen. These can involve a feeling of déjà vu (feeling like you’ve been here before), suddenly feeling intense fear or joy, tingling in the arms and legs, stiffness or twitching in the body, unusual tastes or smells and a ‘rising’ sensation in the tummy.⁵

Causes, risk factors and life expectancy

The causes of epilepsy are complex and not always easy to identify, in up to 50% of people the cause is unknown. It could be a result of a person’s genetics, a structural change in the brain or other comorbidities such as brain tumours and infectious diseases, such as meningitis and viral encephalitis. Certain events can also make epileptic seizures more likely, such as lack of oxygen the brain, or brain injury from an accident or a stroke.¹

In adults with epilepsy, the risk of dying is up to three times higher than in the general population¹. However, a recent review found that in adults diagnosed with symptomatic epilepsy (epilepsy caused by brain injury) in the 2000s, life expectancy was increased following diagnosis.¹¹ In most epilepsy subgroups they found no significant difference between life expectancy of adult epilepsy patients compared to the general population.¹¹

What causes epilepsy?

Epilepsy can be linked to a genetic tendency or be caused by a change in the brain.² This can include brain damage caused by:

A severe head injury², often as a result of a car accident or other traumatic injury
Infectious diseases, such as meningitis, HIV and viral encephalitis³
A stroke or a brain tumour²
Damage from drug or alcohol misuse²
Prenatal injury, such as oxygen deficiencies during childbirth²

Seizures can come on randomly, but many people find that certain factors can trigger them, including lack of sleep, stress, medication, drugs or alcohol, waking up, menstruation and flashing or flickering lights.⁵ These factors do not cause epilepsy in themselves, but they are common triggers of epileptic seizures.

Is epilepsy hereditary?

Around one in three people with epilepsy also has a family member with the condition, which suggests the cause can be hereditary. Therefore, many people who have parents with epilepsy may not experience seizures or develop epilepsy themselves.² It is also sometimes a result of a non-inherited genetic tendency, caused by a change in a person’s genes¹², which can happen as we get older.

Who gets epilepsy?

Epilepsy can develop in anyone at any time in their life, but it’s most commonly diagnosed in people under 20 and in people over the age of 65. This is because people are more likely to experience events which cause brain injuries at these ages. For instance, a lack of oxygen at birth as a child or a stroke in older people.¹³

How long can you live with epilepsy?

Once you have developed epilepsy it is often a lifelong condition², although there are many treatment options to help reduce seizures or even stop them altogether.¹⁴

With proper treatment, 6 out of 10 people with epilepsy can become seizure free within a few years.¹⁵ Some of these people may experience a sudden seizure after years without one, this is known as a ‘breakthrough seizure’. In this case, it is important to seek medical advice as treatment may need to be adjusted.¹⁶

Many people remain on treatment for their whole life², but some people’s seizures disappear over time, which means they can stop taking medication. When epilepsy goes away like this it is called spontaneous remission.¹³

Diagnosis

People who are diagnosed with epilepsy tend to experience repeated seizures. Having a single seizure doesn’t mean you have epilepsy, however, if you have experienced a seizure ensure that you talk to your GP or primary care giver straight away so that they can begin exploring the cause.²

First, doctors will look to determine whether the seizures you are experiencing are starting in the brain or not. Other types of seizures, such as those caused by low blood sugar or heart problems, are not associated with epilepsy.¹⁷

If they believe it may be epilepsy, you will usually be referred to a neurologist, which is a doctor who specialises in conditions affecting the brain and nerves.¹⁸

How is epilepsy diagnosed?

There is no single test to diagnose epilepsy, so it can be a lengthy process while doctors look at a range of information to find out what’s causing the seizures. Often, the symptoms can appear similar to other conditions like panic attacks, migraines or fainting, so any specific information you can provide about your seizures will be helpful. This might include:

Describing when the seizure happened and what you were doing beforehand
Writing down anything you can remember about how you felt before, during and after the seizure, such as physical sensations, emotions and whether you remained alert or not
Taking someone with you who has experienced one of your seizures or asking them to write some notes that you can give to your doctor
Taking a video recording of one of your seizures.

Tests to diagnose epilepsy

Once your doctor has a clearer picture of the seizures you’re experiencing, they may suggest some tests. These will help them to gather more information for a diagnosis and to rule out other causes, but the tests can’t confirm or dismiss epilepsy on their own.¹⁹

The tests for epilepsy include:

Brain scans – the main type of brain scan is a magnetic resonance imaging (MRI) scan. This creates an image of your brain using magnetic fields and can show doctors anything unusual, such as brain damage, scarring or a growth.¹⁸
EEG – short for electroencephalogram, an EEG uses harmless electrodes which are fixed to your scalp. These record electrical signals from your brain onto a computer and are then analysed for any unusual brain activity.¹⁸
Blood tests – doctors will use a syringe to take a blood sample from your arm. This allows them to look for other possible causes for the seizures, such as low blood sugar levels or diabetes.¹⁹
ECG – short for electrocardiogram, an ECG can pick up unusual activity in the heart through electrical sensors which are attached to your body. These are harmless and don’t hurt, and the results can help to rule out whether the seizures are linked to the way your heart is working.¹⁹

Treatment and medication

If you have been diagnosed with epilepsy there are a range of treatments available including medication, surgery and stimulation treatments. While epilepsy cannot generally be cured, with the right treatment many people are able to keep seizures under control or even stop them altogether.²⁰

How is epilepsy treated?

Treatment plans are tailored to the individual and depend on their age, the type of seizures they experience and any other medical conditions they may have. You may be asked to keep a seizure diary to give doctors a better picture of your seizures and help them recommend the best course of treatment. This includes simple information such as²¹:

When your seizures happen
How long they last
What symptoms you experience
Any changes to your daily routine, such as different medication or menstruation

Medication

Most people with epilepsy take anti-epileptic drugs (AEDs) to help control seizures by changing the chemical levels in the brain.²⁰ AEDs are effective for around seven out of ten people with epilepsy.²⁰ There are many different kinds of AEDs, you and your specialist will be able to decide which would be best for you. Sometimes a combination of different medications is needed.²² Epilepsy medication comes in capsule, liquid, tablet and syrup forms and is usually taken on a daily basis. Any side effects experienced from these drugs should always be discussed with a doctor or pharmacist. The epilepsy drugs may also affect other medication so should always be taken under the supervision of your healthcare professional.²⁰ If you have recently been diagnosed with epilepsy you may have lots of questions before starting treatment. It’s a good idea to talk these through with your healthcare professional – you might want to note down some questions before your appointment. Here are a few examples of questions to ask about your treatment²³:

How does the medication work?
When and how should I take it?
Am I likely to experience any side effects?
What happens if I miss a dose, am sick, or have diarrhoea?
Is my medicine safe to take during pregnancy?

If you are caring for a child with epilepsy, you may also have additional questions about how best to help them, such as:

What medical information do I need to share with my child’s school?
How can I help my child when they are having a seizure?

Surgery

In cases where AEDs have not helped to control seizures, surgery may be considered. First, tests will be carried out to see if the seizures are caused by a small part of the brain where surgery is possible.²⁰

There are two different types of surgery available²⁴:

Removing a small part of the brain that is causing the seizures
Separating the specific part of the brain that is causing the seizures from the rest of the brain.

Having brain surgery is a big decision and it’s important to be sure before you go ahead. Your doctor will explain the procedure and talk through your concerns about your recovery and any potential side effects. Gather as much information as possible before making a decision.

Intervention

Other procedures used to treat epilepsy include vagus nerve stimulation (VNS) and deep brain stimulation (DBS).

In VNS therapy, a small electrical device (like a pacemaker) is implanted under the skin of your chest. Electrical impulses are sent to your brain through the vagus nerve in your neck.²⁰

It’s unlikely that VNS will stop seizures completely, but it can help to reduce their severity and frequency by changing the electrical signals in the brain. It is often used alongside AEDs.²⁰

DBS works in a similar way. Electrodes are implanted in the chest and connected to wires that go directly to the brain. This is a relatively new procedure that is currently only used on adults and more research needs to be done to understand how effective it is.²⁰

Diet

The ketogenic diet (also known as ketogenic therapy) is a specialist medical diet that is high in fats and low in carbohydrates and protein. It is sometimes used to treat epilepsy when seizures can’t be controlled by AEDs. For this reason, it’s more commonly used to treat children, and it has been shown to reduce the number of seizures in some children.²⁰

It’s important that children only follow the ketogenic diet under strict supervision of a paediatrician or a paediatric dietitian who can make sure that the diet is carefully balanced.²⁰

Exercise

For people whose epilepsy can be triggered by stress, exercise can be useful alongside other treatments. Many people find stress-relieving and relaxation therapies helpful, such as yoga and meditation.²⁰

Prevention

The causes of epilepsy are wide ranging, so there’s no single preventative method, but there are some simple things you can do to help lower your chances of developing it.

Take safety precautions, such as using seat belts, child car seats and bike helmets to reduce the risk of head injury.²⁵
Eat a healthy, balanced diet, avoid smoking and keep alcohol consumption low to reduce your risk of stroke.²⁵

For people who have epilepsy, keeping a seizure diary can be an effective method of preventing epileptic seizures as it can help to pinpoint factors that are more likely to trigger a seizure, and allow you to avoid these situations in future.²⁶

There are some devices which are able to notify others if a seizure occurs by detecting motion. These can be mattress, watch, camera or motion devices. Most of the devices available have not been proven to work in the ‘real world’ (outside of a laboratory setting) so make sure you speak to your doctor if you think you would benefit from one of these devices.²⁷

Scientific studies

While many people with epilepsy respond well to treatment, 30-40% of people have uncontrolled seizures that do not respond to medication.³ For this reason, there is still a lot of research being done to explore new treatments for people with epilepsy.

For example, scientists are exploring why genetics are different in people with epilepsy²⁸ and researching new molecules that could potentially be developed into new epilepsy drugs.²⁹ These findings could be crucial to help discover new medication for people whose seizures do not respond to current treatments.

Referenced sources

World Health Organization. Epilepsy. Accessed December 2020.
NHS. Epilepsy. Overview. Updated September, 2020. Accessed October 28, 2021.
National Institute of Neurological Disorders and Stroke. The Epilepsies and Seizures: Hope Through Research. Updated June, 2020. Accessed October 29, 2021.
Scheffer I, Berkovic S et al. ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia. 2017;58(4):512-521
NHS. Epilepsy. Symptoms. Updated September, 2020. Accessed October 29, 2021.
Epilepsy Foundation. Warning Signs of Seizures. Updated November, 2013. Accessed October 29, 2021.
Epilepsy Society. Focal Aware Seizures. Updated September, 2018. Accessed October 29, 2021.
Epilepsy Society. Focal Impaired Awareness Seizures. Updated September, 2018. Accessed October 29, 2021.
Epilepsy Foundation. Tonic Seizures. Updated March, 2017. Accessed October 29, 2021.
Epilepsy Foundation. atonic Seizures. Updated March, 2017. Accessed October 29, 2021.
Granbichler, C.A., Zimmermann, G., Oberaigner, W., Kuchukhidze, G., Ndayisaba, J.P., Taylor, A., Luef, G., Bathke, A.C. and Trinka, E.,. Potential years lost and life expectancy in adults with newly diagnosed epilepsy. Epilepsia. 2017; 58(11), pp.1939-1945.
Epilepsy Society. Causes of epilepsy. Updated January, 2019. Accessed October 29, 2021.
Epilepsy Society. Epilepsy facts and myths. Updated January, 2021. Accessed October 29, 2021.
NHS. Epilepsy. Treatment. Updated September, 2020. Accessed October 29, 2021.
Epilepsy Foundation. Will I Always Have Seizures? Reviewed March, 2014. Accessed October 29, 2021.
Ettinger, A.B. and Adiga, R.K. Breakthrough seizures—approach to prevention and diagnosis. US Neurology. 2008; 4(1), pp.40-2. doiI: 10.17925/USN.2008.04.01.40
Epilepsy Society. Epilectic Seizures. Accessed 29 October, 2021.
NHS. Diagnosis. Epilepsy. Updated September, 2020. Accessed October 29, 2021.
Epilepsy Society. Tests for Epilepsy. Updated May, 2020. Accessed October, 2021.
NHS. Epilepsy, Treatment. Updated September, 2020. Accessed October 29, 2021.
Epilepsy Action. Keeping a seizure diary. Updated April, 2020. Accessed October 29, 2021.
Epilepsy Action.Taking epilepsy medicine. Updated October, 2020. Accessed October 29, 2021.
Epilepsy Action. Questions to ask your doctor. Updated October, 2020. Accessed October 29, 2021.
Epilepsy Society. Epilepsy Surgery. Updated August, 2021. Accessed October 29, 2021.
Centre for Disease Control and Prevention. Preventing Epilepsy. Updated September, 2020. Accessed October 28, 2021.
NHS. Living With. Epilepsy. Updated September 2020. Accessed October 29, 2021
Epilepsy Foundation. The role of seizure alerts. Updated November, 2019. Accessed October 29, 2021.
Parras A, de Diego-Garcia L, Alves M et al. Polyadenylation of mRNA as a novel regulatory mechanism of gene expression in temporal lobe epilepsy. Brain. 2020;143(7):2139-2153.
Venø MT, Reschke CR, Morris G et al. A systems approach delivers a functional microRNA catalog and expanded targets for seizure suppression in temporal lobe epilepsy. Proc Natl Acad Sci U S A. 2020;117(27):15977-15988.

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