Epilepsy
Epilepsy is a condition that affects the brain and is defined by repeated seizures.
Epilepsy affects more than 600,000 people in the UK. Almost one in every 100 people has the condition.
Symptoms of epilepsy
The main symptoms of epilepsy are repeated seizures. There are different types of seizure, depending on which part of the brain it affects.
The cells in the brain, known as neurons, conduct electrical signals. They communicate with each other in the brain using chemical messengers. During a seizure, there are abnormal bursts of neurons firing off electrical impulses. This can cause the brain and body to behave strangely.
The severity of seizures can differ from person to person. Some people experience an odd feeling with no loss of awareness, or may have a "trance-like" state for a few seconds or minutes. Others lose consciousness and have convulsions (uncontrollable shaking of the body).
Some people might only have a single seizure. If they do not have a high risk of having further seizures, they would not be regarded as having epilepsy.
Types of seizures
People with epilepsy can experience any type of seizure, although most people have a consistent pattern of symptoms.
Seizures can occur when you're awake or asleep.
The type of seizure depends on how much of the brain it affects. There are:
- focal (or partial) seizures – where only a small part of the brain is affected
- generalised seizures – where most or all of the brain is affected
Some seizures do not fit into these categories and are known as unclassified seizures.
Focal seizures
There are two main types of focal seizure.
Generalised seizures
There are 6 main types of generalised seizure.
Myoclonic-tonic-clonic seizures and Myoclonic-atonic are seizures involving a combination of the generalised seizures above.
What to do if someone has a seizure
If you see someone having a seizure, there are some things you can do to help. It will not usually be necessary to call an ambulance after a seizure.
Immediate action required: Phone 999 if:
- the seizure has not stopped after 5 minutes
- the person has more than one seizure without recovering in between
- you know it's the person's first seizure
- the person is injured, has breathing problems, or needs emergency medical attention for any other reason
- the person’s behaviour after a seizure is unsafe
If you're with someone who has a seizure:
- protect them from injury by removing any dangerous or potentially harmful objects nearby
- cushion their head with your hands or soft material
- do not restrain them or attempt to move them (unless they are in immediate danger)
- don't put anything in their mouth
- stay calm, and stay with them until they regain consciousness
When the convulsions have stopped, put them into the recovery position until they've recovered.
Status epilepticus
Status epilepticus is the name for any seizure that lasts longer than 5 minutes, or a series of seizures where the person does not regain consciousness in between. This is a medical emergency and requires treatment as soon as possible.
You can be trained to treat status epilepticus if you care for someone with epilepsy. It's important to phone 999 for an ambulance immediately if you suspect status epilepticus.
If you've been trained to treat the condition, you'll usually have been advised to use either:
- a medication called buccal midazolam that comes in liquid form and is given by trickling the liquid onto the inside of the person's cheek or up their nose (this is the most common immediate treatment)
- a medication called diazepam that's placed in the person's rectum (less commonly used)
If you've tried one of these treatments and the seizures are continuing, phone 999 for an ambulance.
Causes of epilepsy
In some cases of epilepsy a cause cannot be found.
If there's an identifiable cause, it usually involves the brain being affected by a condition.
The brain is a delicate mix of nerve cells, electrical impulses and chemicals, known as neurotransmitters. Any damage has the potential to disrupt the workings of the brain and cause seizures.
The categories of epilepsy can be separated by their causes which might be:
Structural
Causes of structural epilepsy can include:
- cerebrovascular disease (problems with the blood vessels that supply the brain) – such as a stroke or subarachnoid haemorrhage
- brain tumours
- severe head injuries
Genetic
A genetic abnormality can cause epilepsy. Research has found more genetic causes of epilepsy.
Sometimes epilepsy is hereditary (passed on from one or both parents) or it can be a new gene abnormality.
Infectious
Infections like meningitis can cause damage to the brain which can result in epilepsy. Viral infections like HIV can also cause epilepsy.
Metabolic
Sometimes epilepsy is caused by an imbalance of the bodies chemicals. This is very rare.
Immune
Autoimmune conditions that cause encephalitis (inflammation of the brain) can cause someone to develop epilepsy.
Unknown
In many cases, no cause of epilepsy is found. This may be because medical investigations are not advanced enough to identify the cause.
Seizure triggers
For many people with epilepsy, seizures can occur without any obvious trigger. However, certain circumstances or the use of certain substances can sometimes come before a seizure. These include:
- stress
- lack of sleep
- withdrawal from alcohol following heavy drinking
- some medications
- illegal drugs
- your menstrual cycle or period
- flashing lights (this is an uncommon trigger that affects less than 5% of people with epilepsy, and is known as photosensitive epilepsy)
Keeping a seizure diary is a good way to help find out what might trigger your seizures. Every time you have a seizure, record it and make a note of what you were doing. Over time, you might notice some avoidable things that seem to trigger your symptoms.
Diagnosing epilepsy
Epilepsy is usually difficult to diagnose quickly. In most cases, it cannot be confirmed until you have had more than one seizure.
It can be difficult to diagnose because many other conditions, like fainting, migraines and panic attacks, can cause similar symptoms.
If you've had a seizure, you'll be referred to a specialist in epilepsy. This will normally be a neurologist (a doctor who specialises in conditions affecting the brain and nervous system).
Describing your seizures
Some of the most important pieces of information needed to diagnose epilepsy are the details about your seizures.
The doctor will ask you what you can remember and any symptoms you may have had before it happened - things like feeling strange before the seizure or experiencing any warning signs. It is extremely useful to talk to anyone who seen your seizure and ask them exactly what they saw, especially if you cannot remember.
The doctor will also ask about your medical and personal history. They'll ask whether you use any medicines, drugs or alcohol.
The doctor may be able to make a diagnosis of epilepsy from the information you give. They might run further tests like an electroencephalogram (EEG) or magnetic resonance imaging (MRI) scan.
Even if these tests don't show anything, it's still possible that you have epilepsy based on your symptoms and description of your seizures.
Magnetic resonance imaging (MRI) scan
An MRI scan is a type of scan which uses strong magnetic fields to produce detailed images of the inside of your body.
It can be useful in cases of suspected epilepsy. It can often detect possible causes of the condition, such as defects in the structure of your brain.
Electroencephalogram (EEG)
An EEG test can detect unusual brain activity associated with epilepsy. It measures the electrical activity of your brain through electrodes placed on your scalp.
During the test, you may be asked to breathe deeply or close your eyes and you may be asked to look at a flashing light. The test will be stopped immediately if it looks like the flashing light could trigger a seizure.
In some cases, an EEG may be carried out while you're asleep (sleep EEG). Or you may be given a small, portable EEG recording device to monitor your brain activity over 24 hours (ambulatory EEG).
You might be asked to come into the hospital for a few days to have a video telemetry and EEG. During this, an EEG and video will be used to monitor you.
Treating epilepsy
Most people with epilepsy can be successfully treated with anti-seizure medication (ASMs). ASMs do not cure epilepsy, but can prevent seizures from occurring.
There are many different ASMs. They work by changing the levels of the chemicals in your brain that conduct electrical impulses. This reduces the chance of a seizure.
The type of ASM recommended for you will depend on a number of factors like:
- the type of seizures you have
- your age
- whether there are any concerns about a certain ASM interacting with other medicines (like the contraceptive pill)
- whether you're thinking of having a baby
Examples of commonly used ASMs include sodium valproate, carbamazepine, lamotrigine and levetiracetam.
Alternative procedures
Your doctor might suggest an alternative procedure if:
- your epilepsy is still poorly controlled after trying treatment with ASMs
- brain surgery is not suitable for you
This might be vagus nerve stimulation (VNS).
Living with epilepsy
Regular exercise and a healthy diet are recommended for everyone. They can help prevent many conditions, including heart disease and many forms of cancer.
Try to eat a balanced diet, containing all the food groups, to give your body the nutrition it needs. Exercising regularly can increase the strength of your bones, relieve stress and reduce fatigue.
Driving
You must tell the Driving and Vehicle Licence Authority (DVLA) if you've had any epileptic seizures or blackouts. You must stop driving right away. If you ignore these regulations, you might be prosecuted.
The DVLA may wish to contact your GP or epilepsy specialist.
The DVLA may issue a licence if your seizures have never caused you to lose awareness or affected your ability to safely control a vehicle.
Your GP has a legal responsibility to inform the DVLA if they feel that your driving is putting both you and others at risk.
Sudden unexpected death in epilepsy (SUDEP)
When somebody with epilepsy dies and there's no clear cause, it's known as sudden unexpected death in epilepsy (SUDEP).
The risk of SUDEP for someone with epilepsy is low.
The exact causes of SUDEP are unknown. It's not possible to predict who it will affect. One theory is that seizures could affect the person's breathing and heartbeat.
Things that may lead to SUDEP include:
- having seizures which cause loss of consciousness and the body to go stiff and jerk (tonic-clonic seizures)
- poorly controlled epilepsy, such as not using ASMs prescribed to control seizures
- having sudden and frequent changes to ASMs
- being a young adult (in particular male)
- having sleep seizures
- having seizures when alone
- drinking large amounts of alcohol
If you're worried that your epilepsy is poorly controlled, contact your epilepsy specialist. It may be possible to refer you to a specialist epilepsy centre for further treatment.
A charity called SUDEP Action can offer advice and support on SUDEP. They have a helpline for people who have lost a loved one as a result of epilepsy.
Last updated:
10 May 2023