Epilepsy
Epilepsy
Overview
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.
Common Symptoms
Symptom information is not available for this condition yet.
Emergency Warning Signs
Phone 999 or go to A&E if:
someone has:
- a seizure that lasts longer than 5 minutes
- more than 1 seizure without recovering in between
- a seizure for the first time
- a seizure and is injured, has breathing problems, or needs emergency medical attention for any other reason
- is violent, agitated, confused or are a danger to themselves after having a seizure
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.
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)
- do not 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.
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.
There are two main types of focal seizure.
Focal aware seizures are where you remain fully conscious throughout.
Symptoms of a focal aware seizure can include:
- a general strange feeling that is hard to describe
- a “rising” feeling in your tummy – sometimes likened to the sensation in your stomach when on a fairground ride
- an intense feeling that events have happened before (déjà vu)
- experiencing an unusual smell or taste
- a tingling sensation, or “pins and needles”, in your arms and legs
- a sudden intense feeling of fear or joy
- stiffness or twitching in part of the body, such as an arm or hand
These seizures are sometimes known as “warnings” or “auras”, because they can be a sign that another type of seizure is on its way. This can give you time to warn people around you and make sure you’re in a safe place.
Focal impaired awareness seizures are when you lose your sense of awareness. You won’t remember what happened after this type of seizure.
The symptoms of a focal impaired awareness seizure can involve random bodily behaviour, like:
- smacking your lips
- rubbing your hands
- making random noises
- moving your arms around
- picking at clothes
- fiddling with objects
- adopting an unusual posture
- chewing or swallowing
During a focal impaired awareness seizure, you’ll not be able to respond to anyone else. You’ll usually have no memory of it.
There are 6 main types of generalised seizure.
Absence seizures mainly affect children, but they also occur in adults. They cause the person to lose awareness of their surroundings, usually for up to 15 seconds. The person will seem to stare vacantly into space. Some people will flutter their eyes or smack their lips. The person will have no memory of the seizure.
Absences can occur several times a day. They may affect a child’s performance at school. They can be dangerous if they occur at a critical time, like crossing a busy road.
These types of seizures cause your arms, legs or upper body to jerk or twitch, as if you have received an electric shock. They often only last for a fraction of a second, and you’ll normally remain conscious during this time.
Myoclonic jerks often happen in the first few hours after waking up. They can occur in combination with other types of generalised seizures.
These cause the same sort of twitching as myoclonic jerks, except the symptoms will last longer, normally up to 2 minutes. You might lose consciousness during a clonic seizure.
Atonic seizures cause all your muscles to relax suddenly. There’s a chance you may fall to the ground and you could injure yourself.
Tonic seizures cause all your muscles to suddenly become stiff. You might lose balance and fall over. Like atonic seizures, there’s a risk of injury.
Tonic-clonic seizures or convulsions have 2 stages. Your body will initially become stiff and then your arms and legs will begin twitching. You’ll lose consciousness and some people will wet themselves. The seizure normally lasts a minute, but can last longer.
This type of seizure is what most people think of as an epileptic fit.
Myoclonic-tonic-clonic seizures and Myoclonic-atonic are seizures involving a combination of the generalised seizures above.
⚠️ This symptom list is for educational purposes. Having these symptoms does not mean you have this condition. See a doctor for proper diagnosis.
Medicines Commonly Used
⚠️ These medicines are commonly used for confirmed diagnoses of this condition. This is NOT a recommendation or prescription. Treatment must be determined by your doctor.
No medicines have been linked to this condition yet.
When to See a Doctor
Phone 999 or go to A&E if:
someone has:
- a seizure that lasts longer than 5 minutes
- more than 1 seizure without recovering in between
- a seizure for the first time
- a seizure and is injured, has breathing problems, or needs emergency medical attention for any other reason
- is violent, agitated, confused or are a danger to themselves after having a seizure
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.
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)
- do not 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.
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.
There are two main types of focal seizure.
Focal aware seizures are where you remain fully conscious throughout.
Symptoms of a focal aware seizure can include:
- a general strange feeling that is hard to describe
- a “rising” feeling in your tummy – sometimes likened to the sensation in your stomach when on a fairground ride
- an intense feeling that events have happened before (déjà vu)
- experiencing an unusual smell or taste
- a tingling sensation, or “pins and needles”, in your arms and legs
- a sudden intense feeling of fear or joy
- stiffness or twitching in part of the body, such as an arm or hand
These seizures are sometimes known as “warnings” or “auras”, because they can be a sign that another type of seizure is on its way. This can give you time to warn people around you and make sure you’re in a safe place.
Focal impaired awareness seizures are when you lose your sense of awareness. You won’t remember what happened after this type of seizure.
The symptoms of a focal impaired awareness seizure can involve random bodily behaviour, like:
- smacking your lips
- rubbing your hands
- making random noises
- moving your arms around
- picking at clothes
- fiddling with objects
- adopting an unusual posture
- chewing or swallowing
During a focal impaired awareness seizure, you’ll not be able to respond to anyone else. You’ll usually have no memory of it.
There are 6 main types of generalised seizure.
Absence seizures mainly affect children, but they also occur in adults. They cause the person to lose awareness of their surroundings, usually for up to 15 seconds. The person will seem to stare vacantly into space. Some people will flutter their eyes or smack their lips. The person will have no memory of the seizure.
Absences can occur several times a day. They may affect a child’s performance at school. They can be dangerous if they occur at a critical time, like crossing a busy road.
These types of seizures cause your arms, legs or upper body to jerk or twitch, as if you have received an electric shock. They often only last for a fraction of a second, and you’ll normally remain conscious during this time.
Myoclonic jerks often happen in the first few hours after waking up. They can occur in combination with other types of generalised seizures.
These cause the same sort of twitching as myoclonic jerks, except the symptoms will last longer, normally up to 2 minutes. You might lose consciousness during a clonic seizure.
Atonic seizures cause all your muscles to relax suddenly. There’s a chance you may fall to the ground and you could injure yourself.
Tonic seizures cause all your muscles to suddenly become stiff. You might lose balance and fall over. Like atonic seizures, there’s a risk of injury.
Tonic-clonic seizures or convulsions have 2 stages. Your body will initially become stiff and then your arms and legs will begin twitching. You’ll lose consciousness and some people will wet themselves. The seizure normally lasts a minute, but can last longer.
This type of seizure is what most people think of as an epileptic fit.
Myoclonic-tonic-clonic seizures and Myoclonic-atonic are seizures involving a combination of the generalised seizures above.
Causes
In many cases of epilepsy, no clear cause is ever found.
When a cause can be identified, it usually comes down to something affecting the brain. The brain works through a delicate balance of nerve cells, electrical signals, and chemicals called neurotransmitters. Any damage to this balance can disrupt how the brain functions and bring on seizures.
The different types of epilepsy are often grouped by what causes them.
Structural epilepsy can be caused by:
- cerebrovascular disease, meaning problems with the blood vessels supplying the brain, such as a stroke or a subarachnoid haemorrhage
- brain tumours
- severe head injuries
A genetic abnormality can also lead to epilepsy, and ongoing research continues to uncover more genetic causes. Sometimes it runs in the family, passed down from one or both parents, and sometimes it arises from a completely new gene change.
Infections such as meningitis can damage the brain and lead to epilepsy. Viral infections such as HIV can have the same effect.
In rare cases, epilepsy is caused by an imbalance in the body's chemicals, though this is uncommon. Autoimmune conditions that cause encephalitis, an inflammation of the brain, can also lead someone to develop epilepsy.
For many people, despite thorough investigation, no cause is ever identified. This may simply be because current medical tests are not yet advanced enough to pinpoint it.
Seizure triggers
For many people with epilepsy, seizures happen without any clear trigger. Still, certain situations or substances are sometimes noticed just before a seizure occurs. These include:
- stress
- lack of sleep
- withdrawal from alcohol after heavy drinking
- certain medications
- illegal drugs
- the menstrual cycle or period
- flashing lights, an uncommon trigger affecting fewer than 5% of people with epilepsy, known as photosensitive epilepsy
Keeping a seizure diary can be a helpful way to understand what might be triggering your seizures. Each time a seizure happens, write it down along with what you were doing at the time. Over time, patterns may emerge, helping you notice things you can avoid.
Diagnosis
Epilepsy usually cannot be diagnosed quickly. In most cases, doctors cannot confirm it until you have had more than one seizure.
It can be hard to diagnose because several other conditions, such as fainting, migraines and panic attacks, can cause similar symptoms.
If you have had a seizure, you will be referred to a specialist in epilepsy. This is normally a neurologist, a doctor who specialises in conditions affecting the brain and nervous system.
Describing your seizures
Some of the most important information needed to diagnose epilepsy is the details about your seizures.
The doctor will ask what you can remember and what symptoms you may have had before it happened, such as feeling strange beforehand or noticing any warning signs. It helps a great deal to talk to anyone who saw your seizure and ask them exactly what they observed, especially if you cannot remember it yourself.
The doctor will also ask about your medical and personal history. They will 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 may also run further tests, such as an electroencephalogram (EEG) or a magnetic resonance imaging (MRI) scan.
Even if these tests do not show anything unusual, it is still possible that you have epilepsy based on your symptoms and your description of your seizures.
An MRI scan uses strong magnetic fields to produce detailed images of the inside of your body. It can be useful when epilepsy is suspected, since it can often detect possible causes of the condition, such as defects in the structure of your brain.
An EEG test can detect unusual brain activity linked to 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, close your eyes, or look at a flashing light. The test will be stopped immediately if the flashing light seems likely to trigger a seizure.
In some cases, an EEG may be carried out while you are asleep (a sleep EEG). Or you may be given a small, portable EEG recording device to monitor your brain activity over twenty four hours (an ambulatory EEG).
You might also be asked to come into the hospital for a few days to have video telemetry with EEG, during which an EEG and video are used together to monitor you.
Treatment
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.
ASMs are available in different forms, including tablets, capsules, liquids and syrups.
It’s important you follow any advice about when to take ASMs and how much to take. Never suddenly stop taking an ASM because it could cause a seizure.
You shouldn’t take any other medicines whilst taking ASMs without speaking to your GP or epilepsy specialist. This includes over-the-counter medicines or complementary medicines such as St John’s Wort. Other medicines could have a dangerous interaction with your ASM and cause a seizure.
Sodium valproate is not usually prescribed for women of childbearing age. This is because it could cause a baby to have physical defects or developmental problems.
It can be used if there is no alternative, or if your specialist has assessed you and it’s unlikely you’ll respond to or tolerate other treatments. Your specialist or GP will also need to check you’re using a reliable form of contraception. Learn more about the risks of valproate medicines during pregnancy.
Men taking sodium valproate or valproic acid should use effective contraception (condoms, plus contraception used by the female sexual partner) while taking it and for 3 months after stopping. There’s a risk these medicines might cause learning and behavioural problems in your child if your partner becomes pregnant while you’re taking them. Learn more about valproate use in men.
Side effects are common when starting treatment with ASMs. They’re usually short-lived and pass in a few days.
Speak to your healthcare team for more information on the side effects.
If your epilepsy is still poorly controlled after trying treatment with ASMs, you may be referred to a specialist epilepsy centre. They’ll assess if you’re suitable for surgery.
This involves having various types of brain scans to find out where the epilepsy is focused. Memory and psychological tests will assess how the surgery might affect you.
Surgery is only recommended when:
- a single area of the brain is causing seizures (focal seizures)
- removing that part of the brain would not cause any significant loss of brain function
Most people recover from the effects of surgery after a few days. But it could be several months before you’re feeling fit and able to return to work.
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).
VNS involves surgically implanting a small electrical device under your skin, near your collarbone. The device is like a pacemaker.
The device has a wire that’s wrapped around one of the nerves in the left side of your neck, known as the vagus nerve. The device passes a regular dose of electricity to the nerve to stimulate it. This can help reduce the frequency and severity of seizures.
If you feel the warning sign of a seizure coming on, you can activate an extra “burst” of stimulation. This might prevent the seizure from occurring. The stimulation normally occurs every five minutes and lasts for 30 seconds.
How and why VNS works is not fully understood. It’s thought that stimulating the vagus nerve alters the chemical transmissions in the brain.
Most people who undergo VNS still need to take ASMs.
The battery for the VNS device typically lasts up to 10 years. After 10 years you’ll need another procedure to replace it.
A ketogenic diet is a diet high in fats and low in carbohydrates and protein. It’s thought that it may make seizures less likely by altering the chemical composition of the brain.
A ketogenic diet is sometimes advised for children with seizures that are difficult to control and have not responded to ASMs. This is because it’s reduces the number of seizures in some children. It should only be used under the supervision of an epilepsy specialist with the help of a dietitian.
It can also be effective in adults with certain types of epilepsy.
Complications
Regular exercise and a healthy diet are good for everyone, not just people with epilepsy. They can help guard against many conditions, including heart disease and several forms of cancer.
Try to eat a balanced diet with all the food groups, so your body gets the nutrition it needs. Exercising regularly can strengthen your bones, ease stress and reduce tiredness.
Alcohol can also interact with anti-seizure medicines (ASMs). ASMs can make the effects of alcohol stronger, and alcohol in turn can worsen the side effects of ASMs and make the medicine less effective.
Heavy drinking can disturb your sleep patterns, and this raises your chances of having a seizure. Keeping within the recommended daily limits may help lower this risk.
Some ASMs can reduce the effectiveness of certain types of contraception. This includes:
- contraceptive injections
- contraceptive patches
- the combined oral contraceptive pill, often called the pill
- the progesterone-only pill (POP), or mini pill
- contraceptive implants
If you are sexually active and do not want to become pregnant, ask your GP or epilepsy specialist whether your ASMs could affect your contraception. You or your partner may need to use another form of contraception as well, such as a condom or an intrauterine device (IUD).
The effectiveness of the ASM lamotrigine may be reduced if you are also taking the combined oral contraceptive pill.
Some ASMs can make the emergency contraceptive pill less effective. If you need emergency contraception, an IUD may be the better option. Your GP, family planning clinic or pharmacist can advise you on this.
There is no reason why a woman with epilepsy cannot have a healthy pregnancy. It is better if the pregnancy is planned, since there is a slightly higher risk of complications, and forward planning can help minimise these risks.
The main concern is that some ASMs increase the chance of a serious birth defect, such as spina bifida, cleft lip or congenital heart disease. The level of risk depends on the type of ASM and the dose you are taking. The UK Epilepsy and Pregnancy Register can offer more information and advice on using ASMs during pregnancy.
If you are planning a pregnancy, talk to your epilepsy specialist first. It may be possible to switch to a different ASM to reduce the risks. Taking 400 micrograms (mcg) of a folic acid supplement each day can also help lower the risk of birth defects, and your healthcare team may recommend a higher dose depending on your situation.
If you find out you are pregnant, do not stop taking your medicine. The risks to your baby from uncontrolled seizures are far greater than any risks linked to your medication. If you are breastfeeding or plan to breastfeed, talk to your healthcare team or midwife about the medicines you are taking.
Many children with well-controlled epilepsy can learn and join in fully with school activities. Others may need extra support to make the most of their time at school. Make sure your child's teachers know about their condition and the medication they need to manage it. Epilepsy is more common among children with learning disabilities and special educational needs, and these children are entitled to extra help to overcome their difficulties.
Driving
You must inform the Driving and Vehicle Licence Authority (DVLA) if you have had any epileptic seizures or blackouts, and you must stop driving immediately. Ignoring these rules could lead to prosecution.
The DVLA may contact your GP or epilepsy specialist. It may issue a licence if your seizures have never caused you to lose awareness or affected your ability to control a vehicle safely. Your GP has a legal duty to inform the DVLA if they believe your driving puts you or others at risk. You can read more about epilepsy and driving on the DVLA website.
Sudden unexpected death in epilepsy (SUDEP)
When someone with epilepsy dies and there is no clear cause, this is known as sudden unexpected death in epilepsy (SUDEP). The risk of SUDEP for someone with epilepsy is low.
The exact causes of SUDEP are not known, and it is not possible to predict who it will affect. One theory is that a seizure may affect a person's breathing and heartbeat.
Things that may increase the risk of SUDEP include:
- seizures that cause loss of consciousness with stiffening and jerking of the body (tonic-clonic seizures)
- poorly controlled epilepsy, such as not taking ASMs as prescribed
- sudden or frequent changes to ASMs
- being a young adult, particularly a young man
- having seizures during sleep
- having seizures while alone
- drinking large amounts of alcohol
If you are worried that your epilepsy is not well controlled, contact your epilepsy specialist. You may be referred to a specialist epilepsy centre for further treatment.
A charity called SUDEP Action offers advice and support on SUDEP, including a helpline for people who have lost a loved one to epilepsy. Do not include personal information such as name, location or any personal health conditions.