Epilepsy

Epilepsy is a condition that affects the brain, and it is defined by repeated seizures. In the UK, more than 600,000 people have epilepsy. Almost one in every 100 people has the condition.

The main symptom of epilepsy is repeated seizures. There are different types of seizure, and the type depends on which part of the brain is affected.

The cells in your brain, called neurons, carry electrical signals. They talk to each other using chemical messengers. During a seizure, the neurons fire off abnormal bursts of electrical impulses, and this can make the brain and body behave in strange ways.

Seizures can be mild or severe, and they differ from person to person. Some people have an odd feeling but stay aware of what's going on, or they may drift into a "trance-like" state for a few seconds or minutes. Others lose consciousness and have convulsions (uncontrollable shaking of the body).

Some people have only a single seizure. If their risk of further seizures is not high, they would not be regarded as having epilepsy.

Get emergency help straight away 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
• become violent, agitated or confused after a seizure, or is a danger to themselves

If you see someone having a seizure, there are a few things you can do to help. You usually won't need to call an ambulance once the seizure is over.

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 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. It is a medical emergency and needs treatment as soon as possible.

If you care for someone with epilepsy, you can be trained to treat status epilepticus. Phone 999 for an ambulance immediately if you suspect it.

If you've been trained to treat the condition, you'll usually have been advised to use one of these two medicines:

• a medicine called buccal midazolam, which comes as a liquid and is given by trickling it onto the inside of the person's cheek or up their nose (this is the most common immediate treatment)
• a medicine called diazepam, which is placed in the person's rectum (less commonly used)

If you've tried one of these treatments and the seizures are still continuing, phone 999 for an ambulance.

People with epilepsy can have any type of seizure, though most people tend to have the same pattern of symptoms each time. Seizures can happen 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 don't fit into these groups and are called unclassified seizures.

There are two main types of focal seizure.

Focal aware seizures are the ones where you stay fully conscious the whole time. The symptoms can include:

• a general strange feeling that is hard to describe
• a "rising" feeling in your tummy, sometimes compared to the feeling in your stomach on a fairground ride
• an intense feeling that events have happened before (déjà vu)
• 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 called "warnings" or "auras", because they can be a sign that another type of seizure is on its way. That can give you time to warn the people around you and get to a safe place.

Focal impaired awareness seizures are when you lose your sense of awareness. You won't remember what happened afterwards. The symptoms 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 can't 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. The person loses awareness of their surroundings, usually for up to 15 seconds. They seem to stare vacantly into space, and some people flutter their eyes or smack their lips. They will have no memory of the seizure. Absences can happen several times a day. They may affect a child's performance at school, and they can be dangerous if they happen at a critical time, like crossing a busy road.

Myoclonic seizures cause your arms, legs or upper body to jerk or twitch, as if you have received an electric shock. They often last only a fraction of a second, and you'll normally stay conscious during this time. Myoclonic jerks often happen in the first few hours after waking up. They can occur together with other types of generalised seizures.

Clonic seizures cause the same sort of twitching as myoclonic jerks, but the symptoms 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 injure yourself.

Tonic seizures cause all your muscles to suddenly become stiff. You might lose balance and fall over. Like atonic seizures, they carry a risk of injury.

Tonic-clonic seizures, or convulsions, have 2 stages. Your body first becomes stiff, and then your arms and legs begin twitching. You'll lose consciousness, and some people wet themselves. The seizure normally lasts a minute, but can last longer. This is the type of seizure most people think of as an epileptic fit.

Myoclonic-tonic-clonic and myoclonic-atonic seizures involve a combination of the generalised seizures above.

In some cases of epilepsy, no cause can be found. When there is one, it usually involves a condition that affects the brain.

The brain is a delicate mix of nerve cells, electrical impulses and chemicals known as neurotransmitters. Any damage can disrupt how the brain works and cause seizures.

Epilepsy can be grouped by its causes, which might be:

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

A genetic abnormality can cause epilepsy, and research has found more genetic causes. Sometimes it is hereditary (passed on from one or both parents), or it can come from a new gene abnormality.

Infections like meningitis can damage the brain, and that damage can result in epilepsy. Viral infections like HIV can also cause it.

Sometimes epilepsy is caused by an imbalance of the body's chemicals. This is very rare.

Autoimmune conditions that cause encephalitis (inflammation of the brain) can lead someone to develop epilepsy.

In many cases, no cause is found. This may be because medical investigations are not advanced enough to identify the cause.

Many people with epilepsy have seizures without any obvious trigger. Sometimes, though, certain circumstances or substances come before a seizure. These include:

• stress
• lack of sleep
• withdrawal from alcohol following heavy drinking
• some medicines
• 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)

A seizure diary is a good way to find out what might trigger your seizures. Each time you have a seizure, write it down and note what you were doing. Over time, you may notice some things you can avoid that seem to bring on your symptoms.

Epilepsy is usually hard to diagnose quickly. In most cases, it can't be confirmed until you have had more than one seizure.

Part of the difficulty is that many other conditions, such as fainting, migraines and panic attacks, can cause similar symptoms.

If you've had a seizure, your doctor will refer you to a specialist in epilepsy. This will normally be a neurologist (a doctor who specialises in conditions affecting the brain and nervous system).

Some of the most important information doctors need to diagnose epilepsy is the detail of your seizures.

The doctor will ask what you can remember and whether you had any symptoms before it happened, such as feeling strange or noticing a warning sign. It's extremely useful to talk to anyone who saw your seizure and ask them exactly what they saw, especially if you can't remember it yourself.

The doctor will also ask about your medical and personal history. They'll ask whether you use any medicines, drugs or alcohol.

Sometimes the doctor can make a diagnosis from the information you give. They might also run further tests, like an electroencephalogram (EEG) or a magnetic resonance imaging (MRI) scan.

Even if these tests don't show anything, you may still have epilepsy, based on your symptoms and how you describe 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, because 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 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 done 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.

Most people with epilepsy can be treated successfully with anti-seizure medicines (ASMs). They don't cure epilepsy, but they can stop seizures from happening.

There are many different ASMs. They work by changing the levels of the chemicals in your brain that carry electrical impulses, and this lowers the chance of a seizure.

The type of ASM your doctor recommends will depend on a number of things, such as:

• the type of seizures you have
• your age
• any concern about a certain ASM interacting with other medicines (like the contraceptive pill)
• if you're thinking of having a baby

Commonly used ASMs include sodium valproate, carbamazepine, lamotrigine and levetiracetam. They come in different forms, including tablets, capsules, liquids and syrups.

Follow the advice you're given about when to take your ASM and how much to take. Never stop taking it suddenly, because that could cause a seizure.

Don't take any other medicine while you're on an ASM without speaking to your doctor or epilepsy specialist first. This covers medicines you buy over the counter and complementary medicines such as St John's Wort. Other medicines could interact with your ASM in a dangerous way and cause a seizure.

Sodium valproate is not usually prescribed for women of childbearing age, 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 doctor will also need to check that you're using a reliable form of contraception.

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. These medicines might cause learning and behavioural problems in your child if your partner becomes pregnant while you're taking them.

Side effects are common when you start treatment with ASMs. They're usually short-lived and pass in a few days. Speak to your doctor for more information on the side effects.

If your epilepsy is still poorly controlled after trying ASMs, you may be referred to a specialist epilepsy centre. There they'll assess whether surgery is suitable for you. This involves various types of brain scans to find out where the epilepsy is focused, and memory and psychological tests to 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.

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

One option is vagus nerve stimulation (VNS).

VNS means a small electrical device is surgically placed under your skin, near your collarbone. It's much like a pacemaker.

The device has a wire wrapped around one of the nerves on the left side of your neck, called the vagus nerve. It sends a regular dose of electricity to the nerve to stimulate it. This can help reduce how often seizures happen and how severe they are.

If you feel the warning sign of a seizure coming on, you can set off an extra "burst" of stimulation. This might stop the seizure from happening. The stimulation normally occurs every five minutes and lasts for 30 seconds.

Exactly how and why VNS works isn't fully understood. It's thought that stimulating the vagus nerve changes the chemical transmissions in the brain.

Most people who have VNS still need to take ASMs.

The battery for the VNS device usually lasts up to 10 years. After 10 years you'll need another procedure to replace it.

A ketogenic diet is high in fats and low in carbohydrates and protein. It's thought that it may make seizures less likely by changing the chemical composition of the brain.

Doctors sometimes advise a ketogenic diet for children whose seizures are difficult to control and haven't responded to ASMs. This is because it 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.

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 that contains all the food groups, so your body gets the nutrition it needs. Exercising regularly can make your bones stronger, relieve stress and reduce fatigue.

Alcohol can also interact with anti-seizure medicine (ASMs). ASMs can heighten the effects of alcohol. Alcohol can also make the side effects of ASMs worse and make the medicine less effective.

Heavy drinking can disrupt your sleep patterns, and that increases your chances of having a seizure. Drinking no more than the recommended daily limits may help reduce this risk.

Some ASMs can reduce the effectiveness of some types of contraception. This includes:

• contraceptive injections
• contraceptive patches
• the combined oral contraceptive pill, often known as 'the pill'
• the progesterone-only pill (POP) or 'mini pill'
• contraceptive implants

If you're sexually active and do not want to become pregnant, ask your doctor or epilepsy specialist whether your ASMs could affect your contraception. You or your partner may need to use another form of contraception, like a condom or an intrauterine device (IUD).

The ASM lamotrigine may work less well if you're taking the combined oral contraceptive pill.

Some ASMs can make the emergency contraceptive pill less effective. If you need emergency contraception, you may need an IUD. Your doctor, a family planning clinic or a pharmacist should be able to help you.

There's no reason why women with epilepsy cannot have a healthy pregnancy. It's better if the pregnancy is planned, because there's a slightly higher risk of complications. With forward planning, you can minimise these risks.

The main risk is that some ASMs increase the chances of a serious birth defect, like spina bifida, cleft lip or congenital heart disease. The risk depends on the type of ASM and the dose you're taking. The UK Epilepsy and Pregnancy Register can give more information and advice about using ASMs during pregnancy (it is a UK service).

If you're planning a pregnancy, talk to your epilepsy specialist. It may be possible to change the ASM you're taking to lower the risks. Taking 400 micrograms (mcg) of a folic acid supplement each day can also help reduce the risk of birth defects. Your healthcare team may recommend more than this.

If you find out you're pregnant, do not stop taking your medicine. The risks to your baby from uncontrolled seizures are far higher than any risks from your medicines.

If you're breastfeeding or plan to breastfeed, talk about your medicine with your healthcare team or midwife.

Many children with well-controlled epilepsy can learn and take part in school activities without being affected by their condition. Others may need extra support to get the most out of their time at school. Make sure your child's teachers know about the condition and the medicine needed to control it.

Epilepsy is more common among children with learning disabilities and special educational needs. These children are entitled to extra help to overcome their difficulties.

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, and 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 offers advice and support on SUDEP. It also has a helpline for people who have lost a loved one as a result of epilepsy.