Epilepsy Awareness Information

PLEASE NOTE THAT THIS PAGE IS STILL UNDER CONSTRUCTION AND HAS NOT BEEN COMPLETED OR EDITED 

 

This information has been taken from the epilepsy.org website. See link below.

https://www.epilepsy.org.uk/info/what-is-epilepsy

What is epilepsy?

Epilepsy is a condition that affects the brain. When someone has epilepsy, it means they have a tendency to have epileptic seizures.
Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. Epilepsy is usually only diagnosed if someone has had more than one seizure, and doctors think it is likely they could have more.

Epilepsy can start at any age and there are many different types. Some types of epilepsy last for a limited time and the person eventually stops having seizures. But for many people epilepsy is a life-long condition.

What are epileptic seizurs?
Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. The result is an epileptic seizure.

There are many different types of seizure. What happens to someone during a seizure depends on which part of their brain is affected. During some types of seizure the person may remain alert and aware of what’s going on around them, and with other types they may lose awareness. They may have unusual sensations, feelings or movements. Or they may go stiff, fall to the floor and jerk.

Read more about different types of epileptic seizures or take our quick e-learning module to see what different types of seizures look like and learn what to do when someone has one.

How common is epilepsy?
Epilepsy is one of the most common serious neurological conditions in the world. It affects around 600,000 people in the UK. This means that almost 1 in 100 people in the UK have epilepsy. Around 87 people are diagnosed with epilepsy in the UK every day.

What causes epilepsy?
Sometimes, doctors can find a clear cause for a person’s epilepsy. Possible causes of epilepsy include:
Stroke
A brain infection, such as meningitis
Severe head injury
Problems during birth which caused the baby to get less oxygen
But in over half of all people with epilepsy, doctors don’t know what caused it. Some may have a family history of epilepsy, suggesting that they may have inherited it. Scientists are trying to find out more about how epilepsy might be inherited.
Find out more about epilepsy and inheritance.

How is epilepsy diagnosed?
The main way doctors diagnose epilepsy is by taking a detailed description of the seizures. They may also arrange for some tests to help give them more information about the possible type and cause of the epilepsy. This can also help rule out any other conditions that could be causing seizures. These tests can include blood tests, an EEG (recording of the brainwaves) and brain scans. But there isn’t a single test that can prove if someone does or does not have epilepsy.
Find out more about how epilepsy is diagnosed and the tests involved.

How is epilepsy treated?
The main treatment for epilepsy is epilepsy medicines. These are sometimes called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy, but helps to stop or reduce the number of seizures.
If epilepsy medicine doesn’t work well for someone, their doctor might suggest other types of treatment. Other types of treatment include brain surgery, another type of surgery called vagus nerve stimulation, and a special diet called the ketogenic diet which is sometimes used for children.
Find out more about epilepsy treatment.

How can I help someone having a seizure?
Visit our first aid for seizures webpage.
Take our quick e-learning module to find out what to do when someone has a seizure.
What is living with epilepsy like?
Epilepsy affects everyone in different ways. Watch our videos of people sharing their experiences of living with epilepsy.
Further information
If you would like to see this information with references, visit the Advice and Information references section of our website. See What is epilepsy? If you are unable to access the internet, please contact our Epilepsy Action freephone Helpline on 0808 800 5050.

Epileptic seizures explained
If you have epilepsy, it means you have a tendency to have epileptic seizures. But what are epileptic seizures?
Electrical activity is happening in our brain all the time, as networks of tiny brain cells send messages to each other. These messages control all our thoughts, movements, senses and body functions. A seizure happens when there is a sudden, intense burst of electrical activity in the brain, which causes the messages between cells to get mixed up. The result is an epileptic seizure.

How a seizure affects you depends on what area of the brain is involved in this intense electrical activity. You might lose consciousness, or you might stay aware of what’s happening around you. You might have strange sensations, or movements you can’t control. Or you might go stiff, fall to the floor and shake.
Some people only have one type of seizure, and some people have more than one type.
Click on the links below to find out how seizures are classified, and learn more about some of the most common types of epileptic seizure.
Seizure classification
Epileptic seizures
Focal seizures
Tonic-clonic seizures
Absence seizures
Myoclonic seizures
Tonic seizures
Atonic seizures
Other seizures
Febrile Seizures
Dissociative seizures
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Seizure classification

There are many different types of epileptic seizure. Seizure classification is a way of naming different types of epileptic seizures and putting them into groups. It’s important for healthcare professionals to all use the same names for seizures to avoid confusion. Being able to recognise and name a seizure accurately is also important, because some medicines and treatments can help some seizure types but not others.
How has seizure classification changed?
The International League Against Epilepsy (ILAE) is a world-wide organisation of epilepsy professionals. In 2017 they announced a different way of organising and naming seizures. Many of the names for seizures are the same as before. But the ILAE has also introduced some new names for seizures, for example focal aware instead of simple partial. The new names don’t change what happens during seizures, but they do give doctors a more accurate way to describe them.
How does the new seizure classification work?
To name a seizure using the new classification, doctors look at 3 things:
Where in your brain the seizure starts
Your level of awareness during the seizure
Whether the seizure involves movement or not
1. Where the seizure starts (the onset)
Seizures can be either focal onset, generalised onset, or unknown onset.
Focal onset
Focal onset means the seizure starts in just one side of the brain. These seizures used to be called partial seizures. Sometimes, a seizure can start as a focal seizure and then spread to involve both sides of the brain. When this happens, it’s called a focal to bilateral tonic-clonic seizure.
Generalised onset
Generalised onset means the seizure affects both sides of the brain from the start.
Unknown onset
Unknown onset means the beginning of the seizure is not clear. As doctors get more information about the seizure, they may be able to decide if it is focal or generalised in onset.
Rarely, doctors might be sure that someone has had an epileptic seizure, but can’t decide what type of seizure it is. This could be because they don’t have enough information about the seizure, or the symptoms of the seizure are unusual. When this happens, it’s called an unclassified seizure.
2. The level of awareness
Focal onset seizures can be put into one of 2 groups depending on what level of awareness you have during the seizure.
Focal aware
During a focal aware seizure, you stay fully aware of what’s happening around you, even if you can’t talk or respond. These seizures used to be called simple partial seizures.
Focal impaired awareness
If your awareness is affected at any time during a focal seizure, it’s called a focal impaired awareness seizure. This replaces the term complex partial seizure.
Generalised onset seizures almost always affect your awareness in some way, so the terms ‘aware’ or ‘impaired awareness’ aren’t used for them.
3. Whether the seizure involves movement or not
Seizures can also be split into motor seizures, which means they involve movement, or non-motor seizures, which means they don’t involve movement.
Motor seizures
A motor seizure is any seizure that involves a change in your movement. For example, a tonic-clonic seizure – where all your muscles go stiff before making rhythmic jerking movements – is a type of motor seizure.
Focal seizures can also be motor seizures if the main symptom involves movement, for example automatic behaviour like plucking at clothes or repeated swallowing.
Non-motor seizures
A non-motor seizure is any seizure that doesn’t involve changes in movement. A focal seizure where your main symptom is a change in vision, smell or hearing is a type of non-motor seizure. Absence seizures are also non-motor seizures.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated July 2017
To be reviewed July 2020

Focal seizures

When an epileptic seizure starts in one side of the brain, it’s called a focal onset seizure or a focal seizure. Both terms mean the same thing. Until recently these seizures were called partial seizures.
What are the main types of focal seizure?
There are 2 main types of focal seizure.
Focal aware seizures
During a focal aware seizure, you stay fully aware of what’s happening around you. This type of seizure used to be called a simple partial seizure.
Focal impaired awareness seizures
If your awareness of what’s happening around you is affected at any time during your seizure, it’s called a focal impaired awareness seizure. This type of seizure used to be called a complex partial seizure.
What happens during a focal seizure?
What happens to you during a focal seizure depends on which part of the brain the seizure happens in. This is because different areas of the brain control movements, body functions, feelings and reactions. Some people experience just one symptom during a focal seizure, while others experience several.
The symptoms of focal seizures can be split into 2 groups. Symptoms that involve movement are called motor symptoms. Symptoms that don’t involve movement are called non-motor symptoms. Here are some examples:
Motor symptoms
Non-motor symptoms
Part of your body, for example one arm, going stiff
Part of your body going limp or ‘floppy’
Rhythmic jerking in part of your body
Brief, irregular jerks in part of your body
Your head and eyes turning to one side
Lip smacking, repeated swallowing or chewing
A jerking movement that starts in one part of your body – usually your hand or face – and then spreads bit by bit to other parts of your body
Having repeated movements such as rocking, pedalling or pelvic thrusting
Undressing
Running or walking
Feelings of fear, anxiety, anger or pleasure
Changes to your vision, hearing, smell or taste
Having sensations of being hot or cold
Seeing or hearing things that aren’t there (hallucinations)
Feeling like your body is distorted
Feeling like part of your body is missing or doesn’t belong to you
Feeling or being sick
Changes to breathing, heart-rate or skin tone
Feeling like what’s happening has happened before (deja vu)
Difficulty processing language

How long do focal seizures last?
Most focal aware seizures are brief, lasting between a few seconds and 2 minutes. Focal impaired awareness seizures usually last between one and 2 minutes.
What happens after a focal seizure?
What happens after a focal seizure varies from person to person. You might feel fine after a focal seizure and be able to get back to what you were doing straight away. Or you might feel confused or tired for some time afterwards. You might need to sleep.
Some people find they have temporary weakness or can’t move part of their body after they’ve had a seizure. This is called Todd’s paresis or Todd’s paralysis. It can last from a few minutes up to 36 hours, before going away.
How can someone help me during a focal seizure?
You might not need any help from people around you during a focal seizure, especially if it’s brief and you’re aware of what’s happening. But if you’re not aware of what you’re doing you might need help to guide you away from danger and keep you safe. See our first aid information, or ask them to take our short online course which shows them what to do when someone has a seizure.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

Tonic-clonic seizures

Tonic-clonic seizures are the type of epileptic seizure most people recognise. In the past they were called grand-mal seizures.
Tonic-clonic seizures can have a generalised onset, meaning they affect both sides of the brain from the start. Or they can start in one side of the brain and then spread to affect both sides. When this happens it’s called a focal to bilateral tonic-clonic seizure.
What happens during a tonic-clonic seizure?
There are 2 phases in a tonic-clonic seizure: the ‘tonic’ phase, followed by the ‘clonic’ phase.
During the tonic phase:
You lose consciousness, so you won’t be aware of what’s happening
All your muscles go stiff, and if you’re standing you fall to the floor
Air might push past your voice box, which can make a sound like you’re crying out
You may bite down on your tongue or inside your mouth
During the clonic phase:
Your limbs jerk quickly and rhythmically
You may lose control of your bladder and/or bowels
Your breathing may be affected, causing a blue tinge around your mouth
Focal to bilateral tonic-clonic seizures
If the seizure starts on one side of the brain and spreads to affect both sides, it’s called a focal to bilateral tonic-clonic seizure. If you have this type of seizure, you might get the symptoms of a focal seizure immediately before you lose consciousness. Examples of these symptoms are feeling frightened, having a rising sensation in your stomach or smelling something that’s not there. This can act as a warning that you’re about to have a tonic-clonic seizure. Some people call this warning an aura.
How long do tonic-clonic seizures last?
Most tonic-clonic seizures last between one and 3 minutes. If a tonic-clonic seizure lasts longer than 5 minutes you may need emergency medical treatment.
What happens after a tonic-clonic seizure?
After a tonic-clonic seizure, you might have a headache and feel sore, tired and very unwell. You might feel confused, or have memory problems. You might go into a deep sleep. When you wake up, minutes or hours later, you might still have a headache, feel sore and have aching muscles.
The length of time it takes to recover after a tonic-clonic seizure is different from one person to the next. Some people feel better after an hour or 2, but for some people it can take several days to feel ‘back to normal’.
Some people find they have temporary weakness or can’t move part of their body after they’ve had a seizure. This is called Todd’s paresis or Todd’s paralysis. It can last from a few minutes up to 36 hours, before going away.
How can someone help me during a tonic-clonic seizure?
There are simple first-aid steps people around you can take, to keep you safe during a tonic-clonic seizure. See our first aid information, or ask them to take our short online course which shows them what to do when someone has a seizure.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated July 2017
To be reviewed July 2020

Absence seizures

Absence seizures are a type of generalised onset seizure, meaning both sides of your brain are affected from the start. In the past absence seizures used to be called petit-mal seizures.
The 2 most common types of absence seizure are typical and atypical.
What happens during an absence seizure?
Typical absences
If you are having a typical absence seizure, you will be unconscious for a few seconds. You will suddenly stop doing whatever you were doing before it started, but will not fall. You might appear to be daydreaming or ‘switching off’ or people around you might not notice your absence. Your eyelids might flutter and you might have slight jerking movements of your body or limbs. In longer absences, you might have some brief, repeated actions. You won’t know what is happening around you, and can’t be brought out of it.
Some people have hundreds of absences a day. They often have them in clusters of several, one after another, and they are often worse when they are waking up or drifting off to sleep. Typical absence seizures usually start in childhood or early adulthood.
Atypical absences
These absences are similar to, but not the same as, typical absences. They last longer, and they start and end more slowly. You might be able to move around, but your muscles might go limp or ‘floppy’, making you clumsy. You may be able to respond to someone during an atypical absence seizure.
People who have atypical absences usually have learning disabilities or other conditions that affect the brain. Atypical absences can happen at any age.
How long do absence seizures last?
A single typical absence seizure usually lasts less than 10 seconds. But some people have clusters of absences one after another.
Atypical absence seizures last longer, up to 30 seconds.
What happens after an absence seizure?
After an absence seizure, you’re normally able to go straight back to what you were doing beforehand. If you’ve had a cluster of several absence seizures you might feel confused.
How can someone help me during an absence seizure?
Ask them to take our short online course which shows them what to do when someone has a seizure.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated July 2017
To be reviewed July 2020

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Myoclonic seizures

Myoclonic seizures are also called myoclonic jerks. They can be generalised onset, meaning both sides of the brain are affected from the start, or they can be focal onset, meaning just one side is affected.
What happens during a myoclonic seizure?
Myoclonic seizures are sudden, short-lasting jerks that can affect some or all of your body. They are usually too short to affect your consciousness. The jerking can be very mild, like a twitch, or it can be very forceful. Sometimes if the jerk is very forceful it can make you throw something you’re holding, or make you fall over.
How long do myoclonic seizures last?
Myoclonic seizures usually only last for a fraction of a second. However, some people have them in clusters of several seizures over a period of time.
What happens after a myoclonic seizure?
After a myoclonic seizure you’re usually able to get back to what you were doing straight away.
How can someone help me during a myoclonic seizure?
Ask them to take our short online course which shows them what to do when someone has a seizure.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated July 2017
To be reviewed July 2020

Tonic seizures

Tonic seizures can be generalised onset, meaning they affect both sides of the brain from the start. Or they can be focal onset, meaning they start in just one side of the brain.
What happens during a tonic seizure?
If a tonic seizure starts in both sides of the brain, all your muscles tighten and your body goes stiff. If you’re standing, you may fall to the floor. Your neck will extend, your eyes open wide and roll upwards. Your arms may raise upwards and your legs stretch or contract. You may cry out and stop breathing during the seizure.
If a tonic seizure starts in one side of the brain your muscles tighten in just one area of the body.
How long do tonic seizures last?
Tonic seizures usually last less than 60 seconds.
What happens after a tonic seizure?
Once a tonic seizure has ended your muscles relax. You might feel sleepy or confused afterwards.
How can someone help me during a tonic seizure?
Ask them to take our short online course which shows them what to do when someone has a seizure.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated July 2017
To be reviewed July 2020

There are no comments yet. Be the first to comment…

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Atonic seizures

Atonic seizures can be generalised onset, meaning they affect both sides of the brain from the start. Or they can be focal onset, meaning they start in just one side of the brain. Atonic seizures are sometimes called drop attacks.
What happens during an atonic seizure?
If you have atonic seizures, usually all your muscles go limp and you drop to the floor. This can result in injuries to your head, nose or face. Sometimes you might not completely fall, but your head may drop forward or you might sag at the knees.
How long do atonic seizures last?
Atonic seizures are very brief, usually lasting just one or 2 seconds.
What happens after an atonic seizure?
Your muscle tone returns as soon as the seizure is over. If you’ve fallen, you can get up again straight away.
How can someone help me during an atonic seizure?
Ask them to take our short online course which shows them what to do when someone has a seizure.
See this information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
B037.04

Epilepsy Action would like to thank Professor Helen Cross, The Prince of Wales’s Chair of Childhood Epilepsy and Honorary Consultant in Paediatric Neurology at UCL Institute of Child Health and Great Ormond Street Hospital for Children, for her contribution to this information.

Professor Cross has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated July 2017
To be reviewed July 2020

There are no comments yet. Be the first to comment…

Febrile Seizures

Young children
Febrile seizures are seizures that are triggered by a high temperature. They happen to around 5 out of every 100 children under the age of 6. They are usually linked to a childhood illness, such as tonsillitis. Febrile seizures are not epilepsy. But children who have had febrile seizures have a higher chance of developing epilepsy when they are older, than children in general.
You can find more information about febrile seizures on the Patient website.
Older children
It’s unusual for a child over the age of 6 to continue having febrile seizures. If they do, they might have a form of epilepsy, and your doctor may want to do some tests to look into this.
Information with references
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
F099.03

Epilepsy Action would like to thank Dr Amanda Freeman, Consultant Paediatrician at Queen Alexandra Hospital, Portsmouth, UK for her contribution to this information.

Dr Amanda Freeman has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.
Updated September 2016
To be reviewed September 2019

Photosensitive epilepsy

Photosensitive epilepsy is where someone has seizures that are triggered by flashing or flickering lights, or patterns. Any type of seizure could be triggered but tonic-clonic seizures are the most common.
There are 2 groups of people who have photosensitive epilepsy:
People who only have seizures triggered by flashing or flickering lights, or patterns. This is sometimes called pure photosensitivity
People who have seizures triggered by flashing or flickering lights or patterns but also have seizures at other times
Flashing and flickering lights
Different people will be affected by lights at different flash or flicker rates. Lights that flash or flicker between 16 and 25 times a second are the most likely to trigger seizures. But some people are sensitive to rates as low as 3 or as high as 60 a second.
Patterns
Different people will be affected by different types of pattern. Those patterns with a high contrast or some that move are more likely to trigger seizures.
How common is photosensitive epilepsy?
Around 3 in every 100 people with epilepsy have photosensitive epilepsy. If someone else in your family has photosensitive epilepsy, you are more likely to have it too. And if someone in your family has juvenile myoclonic epilepsy, you are also at higher risk of having photosensitive epilepsy.
There are many types of epilepsy and photosensitive epilepsy is most common in the following:
Juvenile myoclonic epilepsy
Childhood absence epilepsy
West syndrome
Lennox Gastaut syndrome
Juvenile absence epilepsy
Dravet syndrome
Is photosensitive epilepsy more common at a particular age?
Most people who develop photosensitive epilepsy are aged between 7 and 19 years old. But a small number of people who develop epilepsy as adults, also have photosensitive seizures. And some people who had photosensitive epilepsy as children, will continue having photosensitive seizures when they become adults. Females are more likely to have photosensitive epilepsy than males.
Are there tests that can show if I have photosensitive epilepsy?
Your doctor might ask you to have an electroencephalogram (EEG) test to see if you have photosensitive epilepsy. The EEG records the electrical signals from your brain on an EEG machine. During the test, you will be asked to look at some flashing lights, to see whether your brainwave patterns change. If they do, it may mean you have photosensitive epilepsy.
What is the treatment for photosensitive epilepsy?
The most common way to treat photosensitive epilepsy is with epilepsy medicines. This is to lower the risk of having a seizure. To reduce the risk further, try to avoid looking at things that you know can trigger a seizure.
If you find yourself coming across something that might trigger a seizure without warning:
Don’t close your eyes (this could cause a flicker effect)
Do cover one eye with the palm of your hand straight away
Do turn away from the possible trigger
Doing these things reduces the number of brain cells that could be stimulated and in that way the risk of a seizure happening is reduced.
Find out more about possible seizure triggers for people with photosensitive epilepsy.
If you would like to see this information with references, visit the Advice and Information references section of our website or contact our Epilepsy Action freephone helpline on 0808 800 5050.

Seizure triggers for people with photosensitive epilepsy

There are a number of things that could trigger a photosensitive seizure. Because people’s sensitivities are so individual, not everything will affect every person with photosensitive epilepsy. The following are some of the things that people ask us about:
Bicycle lights (red and white)
UK law says that these lights mustn’t flash at less than one or more than 4 flashes a second. Provided the lights comply with the law, they are unlikely to cause a problem.
Ceiling fans
Some ceiling fans can rotate at a fast speed. Looking at light through them could be a seizure trigger.
Christmas lights that flash
There is no UK law that covers the flash frequency of Christmas lights. It’s therefore possible that they could trigger a seizure.
Computer screens
Computer screens are unlikely to be a seizure trigger. However if there are flashing or flickering images, or some types of pattern on the screen, these could be a seizure trigger.
Flashing novelty badges
These can flash at any rate. It is therefore possible that they could be a seizure trigger.
Interactive whiteboards
Unless what is shown on an interactive whiteboard flashes or flickers, or has some types of pattern, they are unlikely to be a seizure trigger.
Light bulbs (any type)
These are only a possible seizure trigger if they are faulty. Otherwise, they shouldn’t cause a problem.
Patterns
These are some examples of patterns that could be seizure triggers:
High contrast patterns such as black and white stripes
Striped or patterned materials and walls
Patterns in some television programmes, video or electronic games
A moving escalator
Strobe lights
We have been unable to find any current official guidance on the recommended flash rate of strobe lights. It is therefore possible that they could be a seizure trigger.
Sunbeds
These may trigger a seizure if the tubes flicker. Otherwise, they shouldn’t cause a problem.
Sunlight
Looking directly at certain patterns caused by sunlight could be a seizure trigger for some people. Examples of these situations are:
Sunlight through slatted blinds
Sunlight through trees, viewed from a moving vehicle
Sunlight reflected off moving water or off snow
Sunlight through moving leaves
Sunlight through railings, as you move past them
TV screens
Modern TV screens don’t flicker so are unlikely to be a seizure trigger for most people. However, if a programme shows images that flash or flicker, these could be a seizure trigger for some people.
Wind turbines
Large wind turbines rotate at a rate that is unlikely to trigger a seizure. Smaller turbines can rotate at a faster rate. When these smaller turbines create a shadow and/or flicker effect with the sun, they could be a seizure trigger.
Useful information
If you are concerned about flashing artificial lights, you can complain to your local council. They should consider complaints about ‘nuisance lights’, but they may not take account of someone’s photosensitive epilepsy. This is because they only have to consider how the nuisance affects the ‘average person’, not people with ‘rare sensitivities.’
If you would like to see this information with references, visit the Advice and Information references section of our website or contact our Epilepsy Action freephone Helpline on 0808 800 5050.

Code:
B007.05

This information has been produced under the terms of The Information Standard.
Updated June 2018
To be reviewed June 2021

Dissociative seizures

Is this page for me?
Other names for dissociative seizures
How are dissociative seizures diagnosed?
How can you tell the difference between epilepsy and dissociative seizures?
What makes dissociative seizures happen?
I have just been told I have dissociative seizures. What do I do now?
What is the treatment for dissociative seizures?
What first aid do I need?
Where can I get support?
Is this page for me?
You may find this information useful if you:
Have just been diagnosed with dissociative seizures
Have been told for years you have epilepsy and you’re now being told the diagnosis was wrong. And that you have dissociative seizures instead
Have been told that you have epilepsy and dissociative seizures
Are waiting for a diagnosis
Are wanting to understand and support someone who has been diagnosed with dissociative seizures
Other names for dissociative seizures
Dissociative seizures have a lot of different names: We have chosen the name used in the International Classification of Diseases. Lots of people are unhappy to have a diagnosis that is ‘not’ something. But the other names are not that easy to understand. You will know which name you prefer.
Non-epileptic attack disorder (NEAD)
Psychogenic non-epileptic seizures
Psychogenic seizures
Pseudoseizures
Functional seizures
Whichever name you recognise, this information is for you.
How are dissociative seizures diagnosed?
Dissociative seizures are often mistaken for epilepsy. They can be difficult to diagnose. In fact it can take several years after someone starts having seizures for them to get an accurate diagnosis of dissociative seizures. Even experienced doctors can find diagnosing dissociative seizures a challenge.
It’s very important to get the right diagnosis. This is because if you’re given a wrong diagnosis of epilepsy, the doctor will probably prescribe you epilepsy medicines. These can have side-effects and will not control your seizures. Being on these medicines also means that the true cause of your seizures may never be investigated.
If you don’t have good seizure control you may be referred to a specialist epilepsy centre for assessment. You could have a type of epilepsy that doesn’t respond well to epilepsy medicines. This is sometimes called intractable or refractory epilepsy. Or you could have dissociative seizures and that’s the reason why you aren’t responding to epilepsy medicines.
Some people have epilepsy and dissociative seizures.
How can you tell the difference between epilepsy and dissociative seizures?
It can be difficult to tell the difference between an epileptic seizure and a dissociative seizure. You can’t usually tell by looking, whether someone is having an epileptic or a dissociative seizure, if you’re not an expert in this field.
One of the ways in which a professional will tell the difference between dissociative seizures and epilepsy, is from an electroencephalogram (EEG). This picks up and records the electrical activity in the brain. If someone is having an epileptic seizure, an EEG will usually show abnormal electrical activity. If someone is having a dissociative seizure, an EEG will not show abnormal electrical activity.
The doctor may also suggest using video-telemetry. This involves you wearing EEG equipment for a few days, and being observed by a video camera linked to the EEG machine. This makes it possible for any seizures you have to be recorded on video and EEG at the same time.
Epilepsy Action has more information about video-telemetry
What makes dissociative seizures happen?
Dissociative seizures happen for psychological reasons rather than physical ones. The psychological reasons could include thoughts, feelings, and present and past experiences. This is different from epilepsy. Epileptic seizures happen because of abnormal electrical activity in the brain.
I have just been told I have dissociative seizures. What do I do now?
It can be really tough to be told you have dissociative seizures. This is especially true if you’ve spent years thinking you have epilepsy, and you’ve been trying to adapt to that. It’s quite usual for it to take time to believe the new diagnosis. Also, if you’re not told carefully, it can sound like the doctor is saying you don’t have a real health condition, or that you are ‘putting it on.’ This is not true. Dissociative seizures are a real medical condition. And the dissociative seizures you experience can be just as disruptive and unsettling as epileptic seizures. You’ll need the support of friends, family and medical people during this time of adjustment.
What is the treatment for dissociative seizures?
If you have dissociative seizures, epilepsy medicine won’t work for you. But don’t stop taking the medicine suddenly because this may be dangerous for you. Your doctor will tell you the right speed to do this at. Often just getting a correct diagnosis and understanding a bit more about your seizures can mean that they start to happen less often.
This is a quote from a specialist that might help:
“You didn’t bring the attacks on, but you can help yourself to get better.”
If seizures don’t stop once you have your diagnosis, a number of more specialist treatments may be offered to you:
Cognitive behaviour therapy (CBT)
Counselling
Psychotherapy
Anti-depressants
The NHS website has information on counselling, CBT and psychotherapy
You may feel you’ve been dismissed with no offer of treatment. If so, go and talk to your GP and make sure they understand you do need treatment to help you manage your seizures. The sooner you do this the better, because if you are offered therapy, you may need to go on a waiting list. Whichever therapy you are offered, it will ideally be with someone who also understands about dissociative seizures. Your neurologist or epilepsy nurse may be able to recommend someone.
Evelina Children’s Hospital has made a film about dissociative seizures (they call it NEAD in the film). The film talks about the service at Evelina. Services at other hospitals may be different.
For tips on how to manage your dissociative seizures see the non-epileptic attack disorder website.
What first aid do I need?
This is what someone needs to do if they see you having a seizure.
Do
Cushion your head
Move any harmful objects away from you
Be calm and reassuring
Call an ambulance if they don’t know if you have epilepsy or dissociative seizures
Don’t
Call an ambulance unless you are injured or they don’t know about your condition
Restrain you in any way
Try to give you any medicine
Dissociative seizures are not dangerous and do not cause damage to the brain. The only reason someone would need to call an ambulance is if you injured yourself. Dissociative seizures often go on longer than epileptic seizures.
Where can I get more information and support?
Website: non-epileptic attack disorder.org.uk
Website: neurosymptoms.org
Website: codestrial.org/dissociative-seizures
Website: fndaction.org.uk. The aim of this website is to raise awareness of functional neurological disorder (FND) and dissociative seizures
Website: neurokid.co.uk This is a website for children and young people with dissociative seizures
There are also a number of groups for people with dissociative seizures on Facebook.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Freephone Helpline on 0808 800 5050.
This information has been produced under the terms of The Information Standard.
Updated September 2015
Currently under review

Code:
F012.03

Epilepsy Action would like to thank Dr Markus Reuber, Consultant Neurologist and Senior Clinical Lecturer at the Academic Neurology Unit of the Royal Hallamshire hospital, for his contribution to this information.

Dr Reuber has no conflict of interest.

Web design

Some people with photosensitive epilepsy can have a seizure triggered by displays that flicker, flash, or blink. This is particularly the case if the flash has a high intensity and is within certain frequency ranges.
There are a number of guidelines and laws that online content producers may want to consider.
World Wide Web Consortium (W3C) guidelines on flashing on websites
The W3C was created in October 1994 to develop protocols and guidelines that ensure long-term growth for the Web. The Web Content Accessibility Guidelines 2.0 were published in 2008 in an effort to improve the accessibility of the web for disabled people.
In connection with photosensitive epilepsy, as part of good practice, it recommends that web pages do not:
Contain anything that flashes more than three times in any one second period or
Flash below the general flash and red flash thresholds
In addition, they suggest:
Reducing contrast for any flashing content
Avoiding fully saturated reds for any flashing content
Reducing the number of flashes even if they do not violate thresholds
Providing a mechanism to suppress any flashing content before it begins
Slowing down live material to avoid rapid flashes (as in flashbulbs)
Freezing the image momentarily if three flashes within one second are detected
Dropping the contrast ratio if three flashes within one second are detected
Allowing users to set a custom flash rate limit
If the user is unable to control the flickering, blinking and moving (this includes stopping these effects from starting), then these effects should not be used.
Disability discrimination legislation
In some countries, such as the UK, it is illegal to discriminate against people with long-term health conditions.
If your website, video or other piece of online content breaks the W3C good practice guide (above), then you should consider if there is a valid reason for it to do so. If there isn’t then you may wish to edit your content to make sure it meets the W3C guidelines.
If you feel that there is a valid reason why your content should break the W3C guidelines, then we strongly urge giving a warning before the flashing starts (for a video, then before the user starts to play the video).
If you don’t alert people with photosensitive epilepsy to flashing and someone has a seizure as a result of your website or video, you may be breaking the disability discrimination laws.
Use of TV broadcasters’ guidance
The UK’s disability discrimination legislation led to the British TV regulators producing a ‘Guidance Note for Licensees on Flashing Images and Regular Patterns in Television’. This gives television broadcasters guidance on the use of flashing images in their programmes. Some online producers use their guidelines to check their content.

Code:
F079.03

This information is exempt under the terms of The Information Standard.
Updated June 2017
To be reviewed June 2020

Reflex epilepsies

Reflex epilepsies are uncommon. They are epilepsies where all or nearly all seizures happen as a result of a specific trigger.
Triggers can be thought of as external, for example looking at flashing or flickering lights or hearing specific music. Or they can be internal, for example thinking hard about something in particular, like mathematical sums.
Different types of reflex epilepsies
Photosensitive epilepsy
Photosensitive epilepsy is a type of epilepsy where flickering or flashing lights, and sometimes strong patterns (usually stripes), trigger seizures. It affects around three in every 100 people with epilepsy.
Epilepsy Action has more information about photosensitive epilepsy.
Reading epilepsy
Reading epilepsy usually starts in the teenage years. In this type of epilepsy, reading triggers brief jerks (myoclonic seizures) around the jaw and mouth. If you carry on reading when the jerks are happening, there is a risk you may go on to have a tonic-clonic seizure. Certain types of reading may be more likely to trigger seizures. These include reading aloud, reading complex texts and reading foreign languages.
Epilepsy Action has more information about seizure types.
Hot water epilepsy
In hot water epilepsy, seizures are triggered by being in hot water (such as in a bath), or by having hot water quickly thrown over your head or body. It is most common in older children and teenagers in Southern India. Less commonly, people outside India may have this type of epilepsy.
Musicogenic epilepsy
People with musicogenic epilepsy have seizures triggered by hearing certain sounds, usually music. Some people only have a seizure when they listen to a specific musical track or tune. Other people have reported having seizures triggered by a particular type of music, or by music played on a particular instrument. Seizures in this type of reflex epilepsy are usually focal seizures.
Other types of reflex epilepsy
Researchers have written about many other things that can trigger seizures in people with reflex epilepsy. These include simple things, such as being touched or tapped, or being startled by a sudden noise. They also include more complex things, such as tooth brushing, eating, playing chess, doing mathematical sums, writing, solving puzzles and so on. These types of epilepsy are very rare and are often the subject of clinical and scientific interest. If you have one of these epilepsies, the same, specific, thing always triggers your seizures.
Seizure types
There are many different types of epileptic seizure. Any type of seizure can happen in reflex epilepsy, but generalised seizures, particularly myoclonic seizures, appear to be most common.
Epilepsy Action has more information about seizure types.
Treatment for reflex epilepsy
Wherever possible, you should try to avoid the thing that triggers your seizures. But if this is difficult, or you also have seizures that don’t have a trigger, you may want to consider taking epilepsy medicines.
Epilepsy Action has more information about epilepsy medicines.
Research into reflex epilepsies
Despite the fact that reflex epilepsies are rare, there is a lot of scientific interest in them. Researchers want to find out why a specific activity or stimulus can trigger an epileptic seizure. Research also continues into why certain things can trigger seizures in some people, but not in others.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action freephone Helpline on 0808 800 5050.

Code:
F089.03

Our thanks
Epilepsy Action would like to thank Dr K Hamandi, Consultant Neurologist at University Hospital of Wales, for contributing to this information.

Dr K Hamandi has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.
Updated October 2015
To be reviewed October 2018

Some common seizure triggers

Some things make seizures more likely for some people with epilepsy. These are often called ‘triggers’. Triggers do not cause epilepsy itself, but they are things that make it more likely that you will have a seizure.
Not all people with epilepsy have seizure triggers. And the things that trigger one person’s seizures might not affect other people with epilepsy in the same way.
Here are some of the seizure triggers that are commonly reported by people with epilepsy:
Not taking epilepsy medicine as prescribed
Feeling tired and not sleeping well
Stress
Alcohol and recreational drugs
Flashing or flickering lights
Monthly periods
Missing meals
Having an illness which causes a high temperature
Not taking epilepsy medicine as prescribed
Taking epilepsy medicines regularly, as prescribed by the doctor, will help to keep a steady level of the medicine in your blood. Several studies have shown that missing a dose of your epilepsy medicine increases the risk of you having a seizure.
Feeling tired and not sleeping well
Many people with epilepsy say that feeling tired or not sleeping well can trigger seizures.
Epilepsy Action has more information about sleep.
Stress
It’s not known exactly why stress might trigger seizures. But many people with epilepsy say that if they are feeling stressed, they are more likely to have a seizure. For some people, feeling stressed can lead to other things, such as changing sleeping or eating habits, drinking more alcohol, and feeling anxious or depressed. All of these can also increase your risk of having a seizure.
Epilepsy Action has more information about stress.
Alcohol and recreational drugs
Some people with epilepsy drink alcohol and some people don’t. It’s up to you to decide if you’re going to drink alcohol. But bear in mind that for some people, alcohol can make seizures more likely.
Drinking more than modest amounts of alcohol in 24 hours can increase the risk of having seizures. After heavy drinking, the risk is highest when the alcohol is leaving your body. This risk is highest between 6 and 48 hours after you’ve stopped drinking.
Epilepsy Action has more information about alcohol.
Recreational drugs include illegal drugs and ‘legal highs’. There is no control over what goes into these drugs. They can be dangerous and they can trigger seizures.
Flashing or flickering lights
Around 3 in 100 people with epilepsy have seizures that are triggered by flashing or flickering lights, or some patterns. This is called photosensitive epilepsy. If you have photosensitive epilepsy, both natural and artificial light may trigger seizures. Some patterns, like stripes or checks, can also trigger seizures for some people with photosensitive epilepsy. The seizure(s) will usually happen at the time of, or shortly after, looking at the trigger.
Epilepsy Action has more information about photosensitive epilepsy.
Monthly periods
Some women with epilepsy find that they are more likely to have seizures at certain times of their menstrual cycle (periods).
Epilepsy Action has more information about seizures and the menstrual cycle.
Missing meals
Some people with epilepsy say that if they skip meals, they are more likely to have a seizure.
Having an illness which causes a high temperature
Some people say that they are more likely to have seizures when they have an illness, such as an infection that causes a high temperature.
What can I do to avoid my seizure triggers?
There are some things you can do to avoid your seizure triggers. These include:
Remembering to always take your epilepsy medicine
Having a good sleep routine
Trying to reduce your stress
Limiting how much alcohol you drink
Avoiding flashing or flickering lights (if you have photosensitive epilepsy)
Talking to your doctor if your seizures follow a pattern connected to your menstrual cycle
Eating regular meals
Epilepsy Action’s booklet and web pages about epilepsy and wellbeing have more detailed information about lifestyle changes which could reduce your risk of seizures.
How can I recognise my triggers?
Keeping a seizure diary is a good way to try and find out what might trigger your seizures. Every time you have a seizure, record it and make a note of what you were doing and how you were feeling. If you do this over time, you might see a pattern emerging.
Epilepsy Action has more information about keeping a seizure diary.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
F095.03

Epilepsy Action would like to thank Wendy Burton, Epilepsy Nurse Specialist, Ipswich Hospital NHS Trust UK, for reviewing some possible seizure triggers .

Wendy Burton has no conflict of interest.

Epilepsy-related deaths

In this section:
Epilepsy-related deaths, risks and how to reduce them
First aid and status epilepticus
Reducing risks of accidents and information on suicide
Epilepsy-related deaths and pregnancy
Epilepsy deaths register and useful organisations
Help and support for people who have been affected by an epilepsy-related death
During 2013, 1,187 people in the UK with epilepsy died earlier than expected (premature death). Some of these deaths could have been prevented.
This information is for you whether you have epilepsy yourself, or you care for someone with epilepsy. It is also for you if someone you know has died from an epilepsy-related death.
Why it’s important to talk about epilepsy-related deaths
Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. Knowing about the risks can help you to make decisions about your epilepsy treatment and your lifestyle.
If you would like to speak to one of our advisers about epilepsy-related death, please contact the Epilepsy Action Helpline
These are some of the causes for epilepsy-related deaths:
Sudden unexpected death in epilepsy
Accidents
Status epilepticus
Suicide
Deaths during pregnancy
Sudden unexpected death in epilepsy (SUDEP)
The definition of SUDEP
If someone with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP).
Premature death in people with epilepsy is higher than in the general population, and SUDEP is the most common cause of this.
SUDEP has been shown to be connected with seizures, particularly tonic-clonic (convulsive) seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.
What is my risk of SUDEP?
Like cot deaths, no one can say whether or not a person is in danger of SUDEP. But there is evidence that the risks are different for different groups of people.
If you are and adult and have epilepsy, your risk is 1 in 1000. This means 1 person in 1000 will die, but 999 will not
If you are a child with epilepsy, your risk is 1 in 4500. This means that 1 child will die, but 4499 will not
If you have 3 or more generalised tonic-clonic seizures in a year, you have an increased risk, particularly if they happen during sleep
If you are being considered for epilepsy surgery, you are considered to be at increased risk
If you have a drug or alcohol problem, your risk is higher than someone who doesn’t have these problems
If you have had a recent epilepsy-related injury or are being treated for depression, you are at increased risk
If you have absence or myoclonic seizures, you are not known to be at increased risk
If you have very few seizures, you are at a lower risk, but still at risk
Ways to reduce the risks of SUDEP if you have epilepsy
Seizure control
The most effective way to reduce the risk of SUDEP is to have as few seizures as possible.
If your seizures are not controlled, here are some ways to manage your epilepsy:
Always take your epilepsy medicines exactly as prescribed
Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first
Make sure you never run out of your epilepsy medicines
Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines
Ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery
Try not to sleep on your stomach as recent research suggests that people with epilepsy who sleep on their stomach may be at higher risk of SUDEP
Other possible helpful ideas:
Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures
Avoid situations which may trigger your seizures. Common triggers include forgotten epilepsy medicines, lack of sleep, stress and too much alcohol
Consider buying a safety pillow. Safety pillows have small holes. They may help you breathe more easily than a normal pillow if you are lying face down during a seizure. There is no evidence however that safety pillows reduce the risk of SUDEP
If your seizures happen at night, talk to your family doctor or epilepsy specialist nurse about using a bed alarm. Bed alarms can alert another person if you have a seizure. This will help the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms can be very expensive and are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.)
Tell people about your epilepsy and let them know how they can help you if you have a tonic-clonic seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy
For information about alarms and manufacturers, you can contact Disabled Living Foundation’s equipment helpline. They provide information about suppliers of specialist equipment to help with everyday living.
If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Action Helpline, 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code:
F006.05
Epilepsy-related deaths and pregnancy
First aid and status epilepticus
Reduce risk of epilepsy-related deaths due to accidents
SUDEP Action and the epilepsy deaths register

Epilepsy Action would like to thank Consultant Neurologist Dr John Paul Leach of Southern General Hospital Glasgow for his contributions to this information. He has declared no conflict of interest.

This information has been produced under the terms of The Information Standard.
Updated April 2016
To be reviewed April 2019