Epilepsy – A Guide

Epilepsy affects the brain and the condition causes repeated seizures, which were commonly referred to as epileptic fits.

Introduction
Symptoms of epilepsy
Causes of epilepsy
Diagnosing epilepsy
Treating epilepsy
What to do if someone has a seizure
Complications of epilepsy
Preventing epilepsy

Introduction

Epilepsy is a relatively common condition, affecting around 456,000 people in the UK. Epilepsy usually begins during childhood, although it can start at any age. Around one in every 280 children is affected by epilepsy.

Seizures

The cells in the brain, known as neurons, communicate with each other by using electrical impulses. During a seizure, the electrical impulses are disrupted, which can cause both the brain and the body to behave strangely.

The severity of the seizures can differ from person to person. Some people will simply experience a ‘trance-like’ state for a few seconds, or minutes, whereas others will lose consciousness and have convulsions (uncontrollable shaking of the body).

Types of epilepsy

There are three main types of epilepsy:

• symptomatic epilepsy – where the symptoms of epilepsy are due to damage or disruption to the brain,
• cryptogenic epilepsy – where while no evidence of damage to the brain can be found, there are other symptoms such as learning difficulties, that suggest that damage to the brain has occurred, and
• idiopathic epilepsy – where no obvious cause for epilepsy can be found.

SeeEpilepsy – causes for more information about the different types of epilepsy.

Sudden Unexpected Death in Epilepsy

Epilepsy is not usually a life-threatening condition. However, each year in the UK, a small number of people die from epilepsy. Accidents and status epilepticus (an uncommon type of seizure) account for some deaths, but the most common cause of death from epilepsy is Sudden Unexpected Death in Epilepsy (SUDEP)

Approximately 500 people die from SUDEP in the UK each year. However, it should be stressed that SUDEPs are very rare, affecting just 0.5% of people with severe epilepsy.

There are many different types of epilepsy, and the risk of SUDEP developing will vary depending on the type of epilepsy that you have and how effectively it is managed. For a small number of people, the risk of SUDEP may be higher. This is why it is important to understand your own type of epilepsy and how best to manage it.

Outlook

Epilepsy is a long-term condition and, for most people, the outlook is very good. Symptoms can usually be controlled using a class of medication known as anti-epileptic drugs (AED).

However, it can take some time to find the right type of AED, and the correct dose, before your seizures are brought under control.

With a clear understanding of your epilepsy and good management of your seizures, the risk of SUDEP can be minimised.

Symptoms of epilepsy

The main symptoms of epilepsy are repeated seizures.

Doctors who treat epilepsy classify seizures by how much of the brain is affected. There are:

• partial seizures – where only a small part of the brain is affected, and
• generalised seizures – where most or all of the brain is affected.

Partial seizures

There are two types of partial seizure:

• simple partial seizure – this is a seizure where you remain conscious, and
• complex partial seizure -this is a seizure where you lose your sense of awareness and may have no memory of the event.

Symptoms of a simple partial seizure include:

• experiencing changes in the way things look, smell, feel, taste or sound,
• experiencing an intense feeling of déjà vu (a feeling that these events have happened before),
• experiencing a tingling sensation (‘pins and needles’) in your arms and legs
• experiencing a sudden intense emotion, such as fear or joy,
• the muscles in your arms, legs and face may become stiff, and
• you may experience twitching on one side of your body.

The symptoms of a complex partial seizure are normally characterised by apparently strange and random bodily behaviour, such as:

• smacking your lips,
• rubbing your hands,
• making random noises,
• moving your arms around,
• picking at clothes,
• fiddling with objects,
• adopting an unusual posture, and
• chewing, or swallowing.

During a complex partial seizure, you will not be able to respond to anyone else, and you will have no memory of the event.

Complex partial seizures are quite common, accounting fortwo in 10of all seizures experienced by people living with epilepsy.

Generalised seizures

In most cases a person having a generalised seizure will be completely unconscious.

There are six main types of generalised seizure, which are described below.

Absences

Absences (also known as petit mal seizures) are seizure that mainly affects children. They cause the child to lose awareness of their surroundings forfive to 20 seconds. The child will seem to just stare vacantly into space, although some children will flutter their eyes or smack their lips. The child will have no memory of the seizure.

Absences can occur several times a day. Though they are not dangerous, they may affect the child’s performance at school.

Myoclonic jerks

These types of seizures cause your arms, legs or upper body to jerk or twitch – much like if you have received an electric shock. They often only last for a fraction of a second, and you should remain conscious during this time.

Myoclonic jerks often happen in the first few hours after waking up and can occur in combination with other types of generalised seizures.

Clonic seizure

This causes the same sort of twitching as myclonic jerks, except the symptoms will last longer, normally up to two minutes. Loss of consciousness may occur.

Atonic seizure

This causes all of your muscles to suddenly relax, so there is a chance you will fall to the ground and facial injuires are common with this type of seizure.

Tonic seizure

Unlike an atonic seizure, this causes all of the muscles to suddenly become stiff and you can then lose balance and fall over,so injuries to the back of the head are common with this type of seizure.

Tonic clonic seizure

A tonic colic seizure (also known as a grand mal seizure) has two stages. Your body will become stiff and then your arms and legs will begin twitching. You will lose consciousness and some people will wet themselves. The seizure normally lasts between one and three minutes but they can last longer.

This is the most common type of seizure, accounting for 60% of all seizures experienced by people living with epilepsy.

Tonic-colic seizure are typically what people are referring to when the use the term ‘epileptic fit’.

People can experience any of the above types of seizure, but usually the pattern of somebody’s symptoms remains the same. This pattern is known as an epilepsy syndrome.

Auras

People who have epilepsy often get a distinctive feeling or warning sign that a seizure is on its way. These warning signs are known as auras.

Auras differ from person to person, but some common auras include:

• noticing a strange smell or taste,
• having a feeling of déjà vu,
• feeling that the outside world has suddenly become unreal or dreamlike,
• experiencing a sense of fear or anxiety, and
• your body suddenly feels strange.

While it is normally not possible to prevent the seizure from occurring, you can act on the warning sign by telling people that you think a seizure is on the way. Also, get into a safe place and position so you do not damage your body during the seizure.

Causes of epilepsy

The seizures that are associated with epilepsy are due to other conditions or factors that have affected the brain.

The brain is a delicate mix of neurons (brain cells), electrical impulses, and special chemicals, known as neurotransmitters. As a whole, the brain is like a ‘living computer’, so any damage has the potential to disrupt the workings of the brain and cause seizures.

There are three main categories of epilepsy are listed below.

• Symptomatic epilepsy – where there is a known cause for a person’s epilepsy, such as a head injury.
• Idiopathic epilepsy – where despite investigation, no apparent cause for the epilepsy can be found.
• Cryptogenic epilepsy – for which, like idiopathic epilepsy, no apparent cause can be found. However, there is strong evidence to suggest that this type of epilepsy may be the result of brain damage, which may also cause other problems, such as learning difficulties.

Symptomatic epilepsy

Conditions and factors that can cause symptomatic epilepsy include:

• strokes,
• cerebral tumours (an abnormal growth of cells in the brain),
• conditions that affect the structure of the brain, such as cerebral palsy,
• drug and alcohol misuse,
• birth defects,
• problems during birth which cause a baby to be deprived of oxygen, such as the umbilical cord getting twisted, or compressed, during labour,
• infectious conditions that can damage the brain, such as meningitis, and
• head injuries.

Idiopathic epilepsy

Many researchers believe that idiopathic epilepsy can be caused by genetic problems. Researchers think that defects in certain genes can cause special proteins known as ion channels to malfunction. Ion channels help transmit tiny amounts of electricity from one cell to another. So researchers believe that these malfunctioning ion channels could disrupt the electrical impulses of the brain and call seizures.

Research conducted in 2009 indentified a mutated gene in mice that did disrupt ion channels and cause seizure, but it does not necessarily follow that the same gene is responsible for epilepsy in humans. Further research is required in this area.

Cryptogenic epilepsy

Cryptogenic epilepsy is a term that is used when no definite cause for the epilepsy can be found, but there is strong evidence to suggest that the symptoms are due to damage and/or disruption to the brain.

Evidence suggesting that a person has cryptogenic epilepsy includes:

• they have learning difficulties,
• they have a developmental condition, such as autistic spectrum disorder, or
• they have unusual electroencephalogram (EEG) readings (an EEG is a device that measures the electrical activities of the brain).

Epilepsy triggers

Many people with epilepsy find that certain circumstances, or substances, can trigger a seizure. These triggers include:

• stress,
• lack of sleep,
• alcohol, particularly if a large amount is drunk in a short time (binge drinking) and during the ‘hangover’ period,
• the illegal drugs cocaine, amphetamines, ecstasy, and any opiate-based drug, such as heroin, methadone, or codeine,
• health conditions that cause a high temperature (fever), and
• flashing lights – this is actually quite an uncommon trigger, affecting only 5% of people with epilepsy, and is also known as photosensitive epilepsy.

Some women may find that they are more prone to having seizures just before, during, or after, their period.

This is because the hormones released by the body during the time can change the chemical composition of the brain, making seizures more likely. Also the changes in mood many women experience before their period – premenstrual tension (PMT) – can make them feel stressed and anxious, which again increases the chance of a seizure.

See the prevention section for more advice about avoiding potential epilepsy triggers

Seizure thresholds

Most people with epilepsy have something that is known as a seizure threshold. This is the point at which the brain’s natural resistance to seizures and/epilepsy triggers.

People with a low seizures threshold will experience frequent seizures and be very sensitive to epilepsy triggers. Those with a high seizure threshold will experience less frequent seizures, and epilepsy triggers will have less effect on them.

Diagnosing epilepsy

Epilepsy can be difficult to diagnose because there are many other conditions that can cause seizures, such as diabetes, heart disease and less commonly migraines and panic attack.

If you have had a seizure, you will be referred to a specialist in epilepsy. Adults are normally referred to a neurologist (a doctor who specialises in conditions that affect the nervous system). Children may be referred to a paediatrician (a doctor who specialises in treating children).

It would be useful to talk to anyone who witnessed your seizure and ask them exactly what they saw, as it is likely that you will not be able to remember the seizure. Some people find it useful to bring a friend or relative who has witnessed a seizure along with them to see the specialist, so they can describe what they saw.

The epilepsy specialist will also want to know about any associated symptoms, such as if you felt strange before the seizure happened, or if you felt any warning signs. They will also want to know if you are taking any medication, drugs or alcohol.

It is useful to provide as much information as possible so the right treatment plan can be drawn up.

The epilepsy specialist should be able to make a diagnosis of epilepsy from the information that you provide, but they may wish to run further tests.

These tests cannot establish for definite whether you have epilepsy, but they may be able to determine the underlying conditions that could be causing your epilepsy, while also ruling out other conditions.

The two most commonly used tests are outlined below.

Electroencephalogram (EEG)

An EEG test measures the electrical activity of your brain through electrodes that are placed on your scalp. During the test you may be asked to breathe deeply or close your eyes, as these actions could reveal unusual brain activity associated with epilepsy.

You may also be asked to look at a flashing light – but the test will immediately be stopped if it looks like the flashing light could trigger a seizure.

Magnetic resonance imaging (MRI) scan

A MRI scan can often detect possible causes such as defects in the structure of your brain, or the presence of a brain tumour.

Treating epilepsy

Treatment for epilepsy will not normally begin unless you have a second seizure.

This is because it is quite common for a person to have a one-off seizure and never have a second one.

However, occasionally someone may have tests carried out after one seizure such as an EGG test. Once the doctors have carried out their tests and asked for any witness reports, they will then decide whether they feel the person does have epilepsy and if so will need to start treatment.

Anti-epileptic drugs (AEDs)

The majority of people with epilepsy can be successfully treated with medicines known as anti-epileptic drugs (AEDs). AEDs do not cure epilepsy, but they do prevent seizures from occurring.

There are many different AEDs, but they all tend to work by either:

• altering the electric transmissions in your brain in a way that reduces the chance of a seizure, or
• altering the chemicals in your brain in a way that reduces the chance of a seizure.

Side effects are common when starting treatment with AEDs and include:

• nausea,
• abdominal pain,
• drowsiness,
• dizziness,
• irritability, and
• mood changes.

For some people, the side effects will pass within a few days, whereas for others, the effects may persist for many months.

Some side effects, which produce symptoms that are similar to being drunk, occur when the dose of AEDs you are taking is too high. They include:

• unsteadiness,
• poor concentration,
• drowsiness,
• vomiting, and
• double vision.

If you experience any of these symptoms contact your GP, or epilepsy specialist, immediately, so that your dosage can be revised.

It is important that you follow any advice regarding when to take AEDs, and how much you should take. You should never suddenly stop taking an AED because doing so could cause a seizure.

While taking AEDs, you should not take any other medicines, including over-the-counter (OTC) medicines, or complementary medicines, such as St Johns Wort, without first consulting with your GP, or epilepsy specialist. This is because other medicines could cause a dangerous interaction with your AED and cause a seizure to occur.

The different medications that make up the family of AEDs are classified as either ‘first-line’ or ‘second-line’.

When your treatment begins, you will usually be given a first-line AED because they are known to be effective for most people. However, if the AED fails to control your symptoms, or you find that your side effects are particularly troublesome, you may then be given a second-line AED.

It can be dangerous to immediately switch from one AED to another. Therefore, your old AED dose will be gradually reduced, and your new AED dose will be gradually increased. If you still do not respond to treatment, a combination of both first and second line AED may be required.

If you remain seizure free for more than two years, it may be possible for you to stop taking your AED. Your epilepsy specialist will be able to discuss with you the best way to safely withdraw from your AED.

You do not have to pay any NHS prescription charges if you are taking AED.

For more information about the different types of AED available, see the ‘medicine guide’ section of this article.

Vagus nerve stimulation (VNS)

If, after trying various types of AED, your epilepsy is still poorly controlled, vagus nerve stimulation (VNS) therapy may be recommend for you. This involves surgically implanting a small electrical device, similar to apacemaker, under your skin, near your collarbone.

The device has a lead that is 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, ‘stimulating’ it. This can help to reduce the frequency and severity of seizures.

Also, if you feel the warning sign of a seizure coming on, you can activate an extra ‘burst’ of stimulation that can often prevent the seizure from occurring.

How and why VNS works is still not fully understood, but it is thought that stimulating the vagus nerve alters the chemical transmissions in the brain.

Most people who undergo VNS still need to take AED.

Some mild to moderate side effects of VNS have been reported including:

• temporary hoarseness, and change in voice tone when the device is being used (this normally occurs every five minutes and lasts for 30 seconds),
• sore throat,
• shortness of breath, and
• coughing.

Ketogenic diet

Before AEDs were first introduced during the 1950s and 1960s, one of the treatments for epilepsy was the ketogenic diet.

This medical treatment involves eating a diet that is high in fats, and low in carbohydrates and protein. The diet can alter the chemical balance of your brain, making seizures less likely.

The diet may be of benefit to children who are not responding well to other forms of treatment. However, it is not recommend for adults because the composition of the diet can cause other serious health conditions, such as high blood pressure (hypertension), strokes and heart disease.

The ketogenic diet should only be used under the strict supervision of an epilepsy specialist and a dietitian. See the useful links section for more information about the ketogenic diet.

Surgery

If your epilepsy is still poorly controlled after two years of treatment, you may be referred to a specialist epilepsy centre to see if you are suitable for surgery.

Surgery is only recommended when:

• a single area of only one side of the brain is causing seizures, and
• removing that part of the brain would not cause any significant loss of brain function.

As with all types of surgery, this procedure carries a risk. Around 1 in every 100 people experience a stroke after surgery. Also 5% of people will experience a deterioration of their memory after surgery.

Before having the procedure, your surgeon will explain to you the benefits and risks of the surgery.

Most people normally recover from the effects of surgery after a few days, but it could be two to three months before you are fully fit and able to return to work.

What to do if someone has a seizure

In most cases,medical help is not needed when someone has an epileptic fit.

However, you should call 999 if the seizure lasts longer than five minutes, or if they have a series of seizures without regaining consciousness.

You should also seek medical help if it is the person’s first seizure, or if they have injured themselves.

If you are with someone who is having a tonic-clonic seizure (epileptic fit) you should:

• move them away from anything that could cause injury,such asa busy road or hot cooker,
• cushion their head (if they are on the ground),
• loosen any tight clothing around their neck, such as a collar or tie, to aid breathing,
• when their convulsions stop, turn them so that they are lying on their side,
• stay with them and talk to them calmly, until they have recovered, and
• note the time it starts and finishes.

You should not:

• try to restrain them, or
• put anything in their mouth.

It is impossible for somebody to swallow their own tongue during a seizure.

While somebody having a seizure may bite their tongue, these bites are normally not serious, and will heal in a few days.

Attempting to stop somebody biting their tongue, by placing your hand or an object in their mouth, could be dangerous both for you and them.

Recording information about seizures

If you’ve seen someone having a seizure, you could provide vital information for their GP or neurologist, which can help with diagnosis and treatment.

The following information may be helpful:

• Where was the person? What were they doing?
• Did the person mention any unusual sensations, such as an odd smell or taste?
• Did you notice any mood change, such as excitement, anxiety or anger?
• What brought your attention to the seizure? A noise such as a fall or body movements such as eyes rolling or head turning?
• Did the seizure occur without warning?
• Was there any loss of consciousness or altered awareness?
• Did the person’s colour alter -for example pale, flushed or blue? If so, where – face, lips or hands?
• Did any parts of the body stiffen, jerk or twitch? If so, which parts were affected?
• Did the person’s breathing alter?
• Did they perform any actions, like mumble, wander about or fumble with clothing?
• How long did the seizure last?
• Was the person incontinent (i.e. couldn’t control their bladder or bowels)?
• Did they bite their tongue?
• How were they after the seizure?
• Did they need to sleep? If so, for how long?

If you have epilepsy, you should also record the details of your seizures in your diary. Seizure diaries are available free of charge from the National Society for Epilepsy’s Helpline: 01494 601 400 (open Mon-Fri 10am-4pm) and other sources.

Complications of epilepsy

Contraception

Some anti-epileptic drugs (AEDs) can reduce the effectiveness of some types of contraception including:

• contraceptive injections,
• contraceptive patches,
• the combined oral contraceptive pill,
• the progesterone-only pill (POP) or mini pill, and
• contraceptive implants.

If you are sexually active and you want to avoid pregnancy, you should discuss with your GP or epilepsy specialist whether your AED could affect any of these methods of contraception.

You may need another form of contraception such as a condom or an intrauterine device (the coil).

Some AEDs have also been known to make the emergency contraceptive pill less effective. If you require emergency contraception, you may need an IUD. Your GP, family planning clinic or pharmacist should be able to advise you.

Pregnancy

There is no reason why women with epilepsy cannot have a healthy pregnancy. However, it is always preferable if the pregnancy is planned. This is because there is a slightly higher risk of complications developing during pregnancy. However, with forward planning, these risks can be minimised.

The main risk is that some AEDs are known to increase the chances of a serious birth defect occurring, such as spina bifida, or a hole in the heart. The risks depend on the type of AED, and the dosage, that you are taking because the higher the dose, the greater the risk.

The UK Epilepsy and Pregnancy Register can provide more information and advice about the use of AEDs during pregnancy.

If you are planning a pregnancy, you should talk to your epilepsy specialist. It may be possible to change the AED that you are taking in order to minimise any risks. Taking 5g of a folic acid supplement a day can also help reduce risks of birth defects.

If you find that you are pregnant, and you are taking a ‘high-risk’ AED, do not stop taking your medicine. The risks to your baby from uncontrolled seizures are far higher than any risks associated with your medicines.

There are no risks associated with breastfeeding while taking an AED.

Driving

If you have a seizure, you have a legal responsibility to inform the Driving and Vehicle Licence Authority (DVLA) or, if you live in Northern Ireland, the Driver and Vehicle Licensing Northern Ireland (DVLNI).

You will usually not be able to hold a group one driving licence, required for private cars and motorcycles, until:

• you have remained free from seizures for a year, or
• in the case of people who only have seizures during sleep, there has to be a sleep-only pattern of seizures for three or more years, with no history of seizures occurring during the day.

You will not usually be able to hold a group two driving licence, required for heavy good vehicles and passenger carrier vehicles that are more than 7.5 tonnes, until:

• you have been free from seizures for the past 10 years, and have not been taking AEDs during this period, and
• your epilepsy specialist confirms that there is no likelihood of seizures occurring.

You will need to apply to the DVLA for the return of your licence. They will only return your licence when they are satisfied that your epilepsy is under control. As part of this process they may wish to contact your GP or epilepsy specialist.

You do have the right to appeal against their decision at a magistrates’ court.

Regulations regarding taxis are set by local authorities. The public information website ‘Directgov’ has contact details for all local councils in the UK.

If you ignore these regulations, you will be liable for prosecution. Your GP also has a legal responsibility to inform the DVLA, if it is felt that your driving is putting both you and other people at risk.

If you have epilepsy and you have seizures despite taking AED, you are eligible for a disabled persons’ railcard and bus pass, which allows you to get discounted rail travel and bus fares. See the useful links section for more details.

Status epilepticus

Status epilepticus is a seizure that lasts more than 30 minutes, or a series of repeated seizures, without the person regaining consciousness in between.

This can be dangerous as the body can struggle to circulate oxygen, which can eventually cause brain damage.

Status epilepticus can be treated by an injection of a medicine known as diazepam. This medicine can also be squirted from a tube into the person’s anus (back passage), which is known as rectal diazepam.

An alternative treatment is a medication called buccal midazolam. This comes in liquid form and it is administered by trickling the liquid onto the inside of your cheek. It is then absorbed into your bloodstream.

If you have a child, other relative, or partner, with a previous history of status epilepticus, you may wish to be trained to administer rectal diazepam, or buccal midazolam.

Sudden unexpected death in epilepsy (SUDEP)

When somebody with epilepsy dies and no apparent cause can be found, it is known as sudden unexpected death in epilepsy (SUDEP).

SUDEPs are rare, affecting only 0.5% of people with severe epilepsy. What causes SUDEPs are unknown, but one theory is that seizures could affect the person’s breathing and heart beat.

The risk factors for SUDEP are:

• poorly controlled epilepsy, and
• having a history of seizures occurring during sleep.

If you are 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.

There is also a charity called Epilepsy Bereavement that can offer advice and support on SUDEP, as well as a helpline for people who have lost a loved one as a result of epilepsy.

Preventing epilepsy

If you find that stress is provoking seizures, you may benefit from developing coping strategies that help combat stress. There are many different ways of coping with stress, including:

• exercise,
• yoga,
• meditation, and
• listening to relaxation music.

Joining a self-help group and talking about your concerns to other people living with epilepsy can also help reduce stress and increase your self-confidence.

Heavy drinking can also cause seizures, as well as interacting with anti-epileptic drugs (AEDs), making them less effective.

AEDs can heighten the affects of alcohol, while alcohol can make the side effects of AEDs worse.

Heavy drinking is also associated with disrupted sleep patterns, so this can also increase the risks of you having a seizure.

This is not to say that if you have epilepsy you cannot drink alcohol, but you should ensure that you do not exceed the recommended limits.

The recommended daily levels of alcohol consumption are three to four units of alcohol for men, and two to three units for women. A unit of alcohol is equal to about half a pint of normal strength lager, a small glass of wine, or a pub measure (25ml) or spirits