- Key Information
- Living with epilepsy
- Mark's story
- Nik's story
- Paul's story
- Stephen and Denise's story
What should I do?
If you think you have this condition, you should call an ambulance or go to the hospital immediately.
How is it diagnosed?
Your doctor will ask you for a description of the seizure, either from you or someone else who saw it. Then they may carry out tests to find out which area of your brain is affected and the cause. These tests might include a magnetic resonance imaging (MRI) scan of your brain and an electroencephalogram (EEG), which records your brain activity.
What is the treatment?
Anti-epileptic drugs are usually recommended - they do not cure epilepsy but they help control the seizures. You may find your doctor adjusts the type and dose of anti-epileptic drug until your seizures are under complete control.
In rare cases your doctor may recommend surgery. This will involve removing areas of your brain that have been affected by the seizure. Alternatively, a small electrical device may be installed under the skin in your chest in order to help control your seizures.
In children, if the seizures are not controlled by anti-epileptic drugs, then a specific diet may be recommended by your doctor.
Epilepsy is a condition that affects the brain and causes repeated seizures, also known as fits.
Epilepsy usually begins during childhood, although it can start at any age.
Seizures are the most common symptom of epilepsy, although many people can have a seizure during their lifetime without developing epilepsy.
The cells in the brain, known as neurones, communicate with each other using electrical impulses. During a seizure, the electrical impulses are disrupted, which can cause the brain and body to behave strangely.
The severity of the seizures can differ from person to person. Some people simply experience a ‘trance-like’ state for a few seconds or minutes, while others lose consciousness and have convulsions (uncontrollable shaking of the body).
Read more about the symptoms of epilepsy.
Why does epilepsy happen?
Epilepsy can happen for many different reasons, although usually it is the result of some kind of brain damage.
Epilepsy can be defined as being one of three types, depending on what caused the condition. These are:
- Symptomatic epilepsy – when the symptoms of epilepsy are due to damage or disruption to the brain.
- Cryptogenic epilepsy – when no evidence of damage to the brain can be found, but other symptoms, such as learning difficulties, suggest that damage to the brain has occurred.
- Idiopathic epilepsy – when no obvious cause for epilepsy can be found.
Read more about the causes of epilepsy.
Epilepsy is most often diagnosed after you have had more than one seizure. This is because many people have a one-off epileptic seizure during their lifetime.
The most important information needed by a doctor or neurologist is a description of your seizures. This is how most cases of epilepsy are diagnosed.
Some scans may also be used to help determine which areas of your brain are affected by epilepsy, but these alone cannot be used for a diagnosis.
Read more about diagnosing epilepsy.
How is epilepsy treated?
While medication cannot cure epilepsy, it is often used to control seizures. These medicines are known as anti-epileptic drugs (AEDs). In around 70% of cases, seizures are successfully controlled by AEDS.
It can take some time to find the right type and correct dose of AED before your seizures can be controlled.
In some cases, surgery may be used to remove the area of the brain affected or to install an electrical device that can help control seizures.
Read more about treating epilepsy.
Living with epilepsy
While epilepsy is different for everyone, there are some general rules that can help making living with the condition easier.
You may have to think about your epilepsy before you undertake things such as driving, using contraception and getting pregnant.
Read more about [epilepsy and pregnancy].
Advice is available from your doctor or support groups to help you adjust to life with epilepsy.
Sudden unexpected death in epilepsy (SUDEP), while rare, is one of the main dangers associated with epilepsy. Every year between 500 and 1,000 people die as a result of SUDEP, this is less than 1% of people with epilepsy.
Although the cause of SUDEP is unknown, a clear understanding of your epilepsy and good management of your seizures can reduce the risk.
Read more about living with epilepsy.
Want to know more?
- Epilepsy Action: What is epilepsy?
- Epilepsy Society: What is epilepsy?
- Brain & Spine Foundation: Epilepsy
- SUDEP Action: About SUDEP
The main symptoms of epilepsy are repeated seizures. There are many different types of seizure, depending on the area of the brain affected.
People with epilepsy can experience any variety of seizure, although most people follow a consistent pattern of symptoms known as an epilepsy syndrome.
Seizures can occur when you are awake or asleep (nocturnal seizures).
Doctors classify seizures by how much of the brain is affected. There are:
- 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 types of partial seizure:
- simple partial seizure – where you remain fully conscious throughout
- complex partial seizure – where you lose your sense of awareness and can’t remember what happened after the seizure has passed
Symptoms of a simple partial seizure include:
- changes in the way things look, smell, feel, taste or sound
- an intense feeling that events have happened before (déjà vu)
- a tingling sensation, or ‘pins and needles’, in your arms and legs
- a sudden intense emotion, such as fear or joy
- the muscles in your arms, legs and face may become stiff
- you may experience twitching on one side of your body
The symptoms of a complex partial seizure normally involve 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
- 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 and account for 2 in 10 of all seizures experienced by people with epilepsy.
In most cases, a person having a generalised seizure will be completely unconscious.
There are six main types of generalised seizure:
Absence seizures, sometimes called petit mal, mainly affect children. They cause the child to lose awareness of their surroundings for up to 20 seconds. The child will seem to 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. Although they are not dangerous, they may affect the child's performance at school.
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.
This causes the same sort of twitching as myoclonic jerks, except the symptoms will last longer, normally up to two minutes. Loss of consciousness may occur.
Atonic seizures cause all your muscles to suddenly relax, so there is a chance you will fall to the ground. Facial injuries are common with this type of seizure.
Unlike an atonic seizure, tonic seizures cause all the muscles to suddenly become stiff. You can lose balance and fall over, so injuries to the back of the head are common.
A tonic-clonic seizure, sometimes known as grand mal, 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, and about 60% of all seizures experienced by people with epilepsy are tonic-clonic seizures.
Tonic-clonic seizures are what most people think of as an epileptic fit.
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, but they are actually simple partial seizures.
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
- your body suddenly feeling strange
Although this warning cannot prevent the seizure, it can give you time to warn people around you and make sure you are in a safe place.
Want to know more?
- Epilepsy Action: Seizures.
- Epilepsy Society: Epileptic seizures.
Status epilepticus is a seizure that lasts longer than 30 minutes or a series of seizures where the person does not regain consciousness in between. If a seizure lasts longer than five minutes, call for an ambulance.
Prolonged seizures can be treated with diazepam given as an injection or through someone's rectum. However, if seizures continue because they are not quickly brought under control in this way, it is very important that the patient be transferred to hospital. In hospital, the airways will need to be closely monitored and a high level of sedation may be required to control the seizures.
An alternative treatment is a medication called buccal midazolam. This comes in liquid form and is administered by trickling the liquid onto the inside of your cheek. It is then absorbed into your bloodstream.
You do not have to be a healthcare professional to do this, but you do need the correct training as well as permission from the person who has epilepsy. If you care for someone with epilepsy, you can be trained to administer rectal diazepam or buccal midazolam in case status epilepticus occurs.
Want to know more?
- Epilepsy Action: Status epilepticus.
In most cases of epilepsy, a cause cannot be found. If there is an identifiable cause, it usually involves some form of brain damage.
The brain is a delicate mix of neurons (brain cells), electrical impulses and chemicals, known as neurotransmitters. Any damage has the potential to disrupt the workings of the brain and cause seizures.
There are three main categories of epilepsy:
- Symptomatic epilepsy – there is a known cause for a person’s epilepsy, such as a head injury.
- Idiopathic epilepsy – despite investigation, no apparent cause for epilepsy can be found.
- Cryptogenic epilepsy – like idiopathic epilepsy, no apparent cause can be found. However, there is strong evidence that this type of epilepsy may be the result of brain damage.
Causes of symptomatic epilepsy include:
- conditions that affect the structure of the brain, such as cerebral palsy
- [drugs] 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
- head injuries
- brain tumours
In around 60% of cases, no cause of epilepsy is found. This may be because medical equipment is not advanced enough to spot some types of damage or because the epilepsy has a genetic cause.
Many researchers have suggested that small genetic changes in the brain could be the cause of epilepsy. Current research is looking for defects in certain genes that may affect electrical transmission in the brain.
While a number of studies have been carried out, no strong association has been found between any particular genes and the development of epilepsy.
Read more about genetics.
The term cryptogenic epilepsy is used when no definite cause for epilepsy can be found but there is strong evidence that symptoms are due to damage or disruption to the brain.
Evidence that suggests a person has cryptogenic epilepsy includes:
- they have learning difficulties
- they have a developmental condition, such as autistic spectrum disorder
- they have unusual electroencephalogram (EEG) readings (an EEG is a device that measures the electrical activities of the brain)
Want to know more?
- Epilepsy Society: Causes of epilepsy.
Many people with epilepsy find certain circumstances or substances can trigger a seizure. These triggers include:
- lack of sleep
- alcohol, particularly binge drinking and during a hangover
- illegal drugs such as cocaine, amphetamines, ecstasy, and any opiate-based drugs such as heroin, methadone or codeine
- health conditions that cause a high temperature (fever)
- flashing lights (this is an uncommon trigger that affects only 5% of people with epilepsy, and is known as photosensitive epilepsy)
Some women may be more prone to seizures just before, during or after their period. This is because hormones released by the body during that time can affect chemicals in the brain, making seizures more likely.
Want to know more?
- Epilepsy Action: Possible seizure triggers.
Most people with epilepsy have a seizure threshold. This is the point at which the brain’s natural resistance to seizures is passed, triggering a seizure.
People with a low seizure threshold have frequent seizures, whereas people with a high seizure threshold experience less frequent seizures and triggers will have less effect on them.
Epilepsy is usually difficult to diagnose quickly. In most cases, it cannot be confirmed until you have had more than one seizure.
If you have had a seizure, you will be referred to a specialist in epilepsy, normally a neurologist (a doctor who specialises in conditions that affect the nervous system).
Describing your seizures
Some of the most important pieces of information needed to diagnose epilepsy are the details about your seizure or seizures.
The doctor will ask you what you can remember and any symptoms you may have had before it happened, such as feeling strange before the seizure or experiencing any warning signs. It may be useful to talk to anyone who witnessed your seizure and ask them exactly what they saw, especially if you cannot remember the seizure.
The doctor will also ask about your medical and personal history and whether you use any medicines, drugs or alcohol.
The doctor may be able to make a diagnosis of epilepsy from the information you give, but they might run further tests.
You may need an electroencephalogram (EEG), which can detect unusual brain activity associated with epilepsy. Or you may have a magnetic resonance imaging (MRI) scan, which can spot any defects in the structure of your brain.
However, even if these tests don't show anything, it is still possible that you have epilepsy.
An EEG test 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, 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 be stopped immediately if it looks like the flashing light could trigger a seizure. Read more about electroencephalograms.
Magnetic resonance imaging (MRI) scan
An MRI scan can often detect possible causes of epilepsy, such as defects in the structure of your brain or the presence of a brain tumour. Read more about MRI scans.
Want to know more?
- Epilepsy Society: Diagnosis.
- Epilepsy Action: Getting a diagnosis.
Anti-epileptic drugs (AEDs) are usually the first choice of treatment. About 70% of people with epilepsy have their seizures controlled with AEDs.
Usually, AED treatment will not begin until after you have had a second seizure. This is because a single seizure is not a reliable indicator that you have epilepsy. In some cases, treatment will begin after a first seizure if:
- An electroencephalogram (EEG) test shows brain activity associated with epilepsy.
- A magnetic resonance imaging (MRI) scan shows damage to the brain.
- You have a condition that has damaged the brain, such as a stroke.
For some people, surgery may be an option. However, this is only the case if removing the area of the brain where epileptic activity starts would not cause damage or disability. If successful, there is a chance your epilepsy will be cured.
If surgery is not an option, an alternative may be to implant a small device under the skin of the chest. The device sends electrical messages to the brain. This is called vagus nerve stimulation (see below).
Sometimes, a special diet is used for children whose seizures are difficult to control and do not respond to drug treatment.
Want to know more?
- Epilepsy Action: Treatment.
Anti-epileptic drugs (AEDs)
Most people with epilepsy can be successfully treated with medicines known as anti-epileptic drugs (AEDs). AEDs do not cure epilepsy, but can prevent seizures from occurring.
There are many different AEDs. Generally, they work by changing the levels of the chemicals in your brain that conduct electrical impulses. This reduces the chance of a seizure.
The drugs used to treat epilepsy are often referred to as first-line and second-line drugs. This does not mean that one type of drug is better than the other, but it refers to when the drugs were first introduced. First-line drugs are older and have treated epilepsy for decades. Second-line drugs are much newer.
The type of drug prescribed depends largely on the kind of seizures that you have.
The older first-line AEDs include [sodium valproate], [carbamazepine], [phenytoin] and phenobarbital.
Newer second-line AEDs are recommended if there is a reason why you cannot take AEDs, if there is concern about an older AED interacting with other drugs (such as the contraceptive pill), or if you are thinking of having a baby.
Newer AEDs include [gabapentin], [lamotrigine], [levetiracetam], [oxcarbazepine], [tiagabine], [topamax] and [vigabatrin]. Levetiracetam is not recommended for children, but the others are recommended if older AEDs do not benefit children with epilepsy.
Your specialist will start you on a low dose of the AED, then gradually increase it within safe limits until your seizures stop. If one AED does not control seizures, another will be tried by gradually introducing the new drug and slowly reducing the dose of the old drug.
The aim is to achieve maximum seizure control with minimum side effects, using the lowest possible dose of a single drug. Trying a different type of AED is preferable to taking more than one AED, although a combination of drugs may be necessary to control seizures.
Follow your specialist's advice as switching brands or formulations could lead to seizures.
Side effects are common when starting treatment with AEDs. However, they are short term and usually pass in a few days. Side effects include:
- abdominal pain
- mood changes
Some side effects, which produce symptoms similar to being drunk, occur when the dose of AEDs is too high. They include:
- poor concentration
- double vision
If you experience any of these symptoms, contact your doctor or epilepsy specialist immediately so that your dosage can be revised.
It is important you follow any advice about when to take AEDs and how much to take. Never suddenly stop taking an AED because doing so could cause a seizure.
While taking AEDs, do not take any other medicines, including over-the-counter medicines or complementary medicines such as St John's Wort, without first speaking to your doctor or epilepsy specialist. Other medicines could have a dangerous interaction with your AEDs and cause a seizure.
If you do not have a seizure for more than two years, it may be possible to stop taking your AEDs. Your epilepsy specialist can discuss with you the best way to safely stop taking your AEDs.
Vagus nerve stimulation (VNS)
If, after you have tried various types of AED, your epilepsy is still poorly controlled, vagus nerve stimulation (VNS) therapy may be recommend. This involves surgically implanting a small electrical device, similar to a pacemaker, 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 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, which can often prevent the seizure from occurring.
How and why VNS works is 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 AEDs.
Some mild to moderate side effects of VNS have been reported, including:
- temporary hoarseness and a 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
A ketogenic diet was one of the treatments used before AEDs were available, but is no longer recommended for adults with epilepsy. A ketogenic diet is high in fats and low in carbohydrates and protein, and may make seizures less likely by altering the chemical composition of the brain. However, a high-fat diet is linked to serious health conditions, such as diabetes and cardiovascular disease, so is not generally recommended.
A ketogenic diet is sometimes advised for children with seizures that are difficult to control and have not responded to AEDs. The diet has been shown to reduce 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.
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 brain surgery.
This involves having various types of brain scans to find out where the epilepsy is focused. Memory and psychological tests are also conducted to gauge how you are likely to cope with the stress of surgery and how it might affect you.
Surgery is only recommended when:
- A single area of only one side of the brain is causing seizures.
- 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. About 1 in 100 patients has a stroke after surgery, and about 5 in 100 experience memory problems. However, around 70% of people who have epilepsy surgery become completely free of seizures.
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.
Deep brain stimulation (DBS) therapy is also a surgical treatment for epilepsy. It is used to treat people with epilepsy that is difficult to control or cannot have a part of their brain removed.
DBS involves implanting electrodes into specific areas of the brain to control seizures. The electrodes are controlled by an external device called a neurostimulator.
Want to know more?
- Epilepsy Action: Epilepsy and surgery.
- Epilepsy Society: Surgery.
- Epilepsy Society: Deep brain stimulation (DBS).
There are several complementary therapies that some people say work for them. However, none has been shown conclusively in a study to reduce seizures. Withdrawing anti-epileptic medication without medical specialist supervision may result in seizures. Treat with caution any advice from therapists to reduce or stop taking your anti-epileptic medication.
Herbal remedies should be used cautiously because some of their ingredients can interact with anti-epilepsy drugs. St John’s Wort, a herbal remedy used for mild depression, is not recommended for people with epilepsy because it can affect the blood levels of anti-epilepsy drugs and may affect seizure control. Ayurvedic herbal medicines are also not recommended.
For some people with epilepsy, stress can trigger seizures. Stress-relieving and relaxation therapies such as exercise, yoga and meditation may help.
Want to know more?
- Epilepsy Action: Complementary treatment.
Living with epilepsy
Regular exercise and a healthy diet are recommended for everyone, not just people with epilepsy. They can help prevent many conditions, including heart disease and many forms of cancer. Try to eat a balanced diet, containing all the food groups, to give your body the nutrition it needs. Exercising regularly can increase the strength of your bones, relieve stress and reduce fatigue.
Heavy drinking can cause seizures, as well as interact with anti-epileptic drugs (AEDs), making them less effective. AEDs can heighten the effects of alcohol, while alcohol can make the side effects of AEDs worse.
Heavy drinking is also associated with disrupted sleep patterns, and this can increase the risk of having a seizure. Drinking no more than the recommended daily limits will reduce any potential side effects.
The recommended daily limits for alcohol are three to four units 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) of spirits.
Want to know more?
- Epilepsy Action: Can I drink alcohol?
Women and epilepsy
Some anti-epileptic drugs (AEDs) can reduce the effectiveness of some types of contraception, including:
- contraceptive injection
- contraceptive patches
- the combined oral contraceptive pill – often known as 'the pill'
- the progesterone-only pill (POP) or mini pill
- contraceptive implants
If you are sexually active and want to avoid pregnancy, ask your doctor or epilepsy specialist whether your AEDs could affect any of these methods of contraception.
You may need to use another form of contraception such as a condom or coil.
Some AEDs have also been known to make the emergency contraceptive pill less effective. If you require emergency contraception, you may need an intrauterine device (IUD). Your doctor, family planning clinic or pharmacist should be able to advise you.
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, cleft lip or a hole in the heart. The risks depend on the type of AED and the dosage you are taking.
If you are planning a pregnancy, talk to your epilepsy specialist. It may be possible to change the AED you are taking to minimise risks. Taking 5mg of a folic acid supplement each day can also help reduce risks of birth defects.
If you discover you are pregnant, 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.
Want to know more?
- [Pregnancy and baby guide].
- Epilepsy Action: Pregnancy.
- UK epilepsy and pregnancy register.
- OptionGrid: Epilepsy treatment in pregnancy (PDF, 64Kb).
Children and epilepsy
Many children with well-controlled epilepsy can learn and participate in their school’s activities completely unaffected 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 their condition and the medication they need 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. Each school will have at least one member of staff with responsibility for children with special educational needs. The law says that all state schools must do their best to meet special educational needs, sometimes with the help of outside specialists.
If your child needs a lot of extra help, the local education authority may carry out an assessment. This will outline the help your child needs, set a number of long-term goals, and ensure your child is regularly reviewed.
Want to know more?
- Epilepsy Society: Children.
Talk to others
If you have any questions, your doctor or nurse may be able to reassure you. You may also find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your doctor surgery will have information on these.
Some people find it helpful to talk to other people who have epilepsy, either at a local support group or in an internet chat room.
If you have a seizure, you have a legal responsibility to inform your driving licence issuer.
You will usually not be able to hold a group one driving licence, required for private cars and motorcycles, until:
- You have not had a seizure for one year.
- 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 seizures occurring during the day.
You will not usually be able to hold a group two driving licence, required for heavy goods vehicles and passenger carrier vehicles that are more than 7.5 tonnes, until:
- You have not had a seizure for the past 10 years and have not been taking AEDs during this period.
- Your epilepsy specialist confirms there is no likelihood of seizures occurring.
You will need to apply to your driving licence issuer for the return of your licence. They will only return your licence when they are satisfied your epilepsy is under control. As part of this process, they may wish to contact your doctor or epilepsy specialist. You will not have to retake a driving test when your licence is returned.
You have the right to appeal against their decision at a magistrates' court.
If you ignore these regulations, you will be liable for prosecution. .
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).
The exact causes of SUDEPs are unknown, and it is not possible to predict who will be affected. One theory is that seizures could affect the person's breathing and heartbeat. More recently, it has been suggested that there may be a genetic cause.
Things that may lead to SUDEP include:
- having seizures which cause loss of consciousness and the body to go stiff and start jerking (generalised tonic-clonic seizures)
- poorly controlled epilepsy, such as not using anti-epileptic drugs (AEDs) as prescribed or to control seizures
- having sudden and frequent changes to AEDs
- being a young adult (in particular male)
- having sleep seizures
- having seizures when alone
- drinking large amounts of alcohol
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.
A charity called Epilepsy Bereaved can offer advice and support on SUDEP.
Want to know more?
- Epilepsy Action: SUDEP
- SUDEP Action
Mark Kellaway, from Basingstoke, found out he had epilepsy at the age of 26. He hadn’t realised he was having seizures, but the diagnosis has had an unexpectedly positive effect.
“I think I’d had epilepsy for a while before I realised anything was wrong. It wasn’t until I moved in with my girlfriend Ruth, who is now my wife, that she noticed it and made me see a doctor.
"At first I thought she was joking. I’d been living with my parents and they hadn’t noticed anything. I think they just thought I was occasionally being odd or drifting off.
“I have left temporal lobe epilepsy with complex partial seizures. I go blank, stare into space and dribble. I don’t respond to anything. I'm not aware it's happening. Apparently it lasts about one minute.
"It normally happens in the evening and at night when I’m asleep. Ruth says I make strange sounds, worse than snoring.
“Sometimes I feel a bit odd afterwards, similar to the early stages of being drunk. I can carry on doing normal tasks, but later on I'm surprised that I've done them. I'm not aware that time has passed. How often the seizures happen varies, but on average it's once or twice a week."
“The doctor tested my blood sugar levels and didn’t find anything. I decided to see a second doctor. He immediately said it seemed like epilepsy. He sent me for a variety of tests, including an EEG (electroencephalogram) to monitor my brain activity.
"I was shocked to hear that it was epilepsy. I thought people with epilepsy fell on the floor and wriggled about [a tonic-clonic seizure]. Like most people, I didn’t know that there were other forms.
"I've had one tonic-clonic seizure, about six months after my diagnosis. It was the day after my stag party. I was eating out with my parents and close friends and, just as our food arrived, I had a seizure. I fell unconscious on the floor and was taken to hospital in an ambulance."
“The diagnosis had a huge effect on my life. I started taking medication to control the seizures and I stopped drinking alcohol. But the biggest change was losing my driving licence. You can’t drive if you have epilepsy.
"At the time I drove 25 miles every day to my job designing a website for a charity. I tried public transport but it involved a bus, two or three trains and a lift from colleagues. They were all very helpful but it was too hard, so I left my job.
“This turned out to be positive because it meant I became a stay-at-home dad, which I love. Ruth was pregnant when I left my job. When our daughter was born we had the first four months at home together getting used to life with a newborn baby.
"I was very scared the day before Ruth went back to work. Looking after the baby on my own felt like a big responsibility. But it was fantastic. We already had a daily routine, so I knew what I needed to do and when. I took the baby out as much as I could, mainly for walks. My daughter is now five and she has a two-year-old sister, so I look after them both."
“I’ve taken seven types of medication since my diagnosis. Some of them have made things worse, and some have made things better, but none of them has solved the problem. At the moment I’m on three drugs.
"The main side effect is having a poor memory. It’s terrible. I remember random and pointless things, but I don’t really remember things such as our wedding day. It feels strange looking at the photos. I know I was there and had a great time, but I can’t remember much, which is very sad.
“Another side effect of the drugs is that I’ve lost weight. I used to be a bit overweight at 15 stone 3 pounds; now I’m 10 stone 8 pounds, which is good, although sometimes I think I’ve lost a bit too much.
“At home, we try to keep things as normal as possible. Avoiding alcohol made no difference to my seizures, so now I can enjoy a glass of wine in the evening. I hope to stay at home until the girls are at school, then I’ll get a local job.
“I would never have considered being a stay-at-home dad if I hadn’t been diagnosed with epilepsy. I have so much fun being with my girls. I've enjoyed seeing them grow up right in front of me. Although I was devastated when I was diagnosed, it's had a positive impact on our lives.”
Since this interview, Mark has had an operation to remove his left temporal lobe, the part of his brain that was involved in his seizures. The operation was a success and he has not had a seizure since. Although he knows this might not be a permanent solution to his condition, Mark hopes that things stay the way they are now.
Find out about epilepsy treatment, including surgery.
Virgin co-founder and film guru Nik Powell talks about rock chicks, flicks and fits.
"I remember having a fit outside a hotel in New York," says Nik Powell, 54, co-founder of Virgin Records who's also epileptic. "When I finally came to, Chrissie Hynde, the lead singer of the Pretenders, was looking over me.”
You'd think this was the stuff of dreams: losing consciousness and waking up to see a rock legend. But it was just another day for Nik.
In the early 1970s, Nik set up Virgin Records with Richard Branson. It started out as a small mail order business, and the rest is history. He then turned his magic touch to films, as the executive producer on movies including Fever Pitch, The Crying Game, Little Voice and Absolute Beginners. His most recent film was Ladies in Lavender starring Dame Judi Dench.
In his latest role as the director of the National Film and Television School in Beaconsfield, Nik is as busy as ever. He has never let epilepsy hold him back.
Nik's health problems were triggered by an accident when he was eight years old. He crashed his dad’s moped into the garden wall, injuring his head, and the fits began. "My first ever fit was in bed," he says. "I don’t remember much apart from waking up to find my family fussing around me and feeling disoriented and sick."
For the next 30 years, he had similar seizures every few months. Nik controlled his fits by taking barbiturates (sedatives), but even on medication he used to have four to five fits a year. As a child with epilepsy, Nik says his worst problem was remembering to take his medication three times a day. He was also bullied. "Some kids gave me stick for my epilepsy," he says. "But I would simply laugh at them and point out all the famous epileptics from history, including Caesar, Napoleon, Dickens and Van Gogh."
He now claims to be an expert on hospitals around the world. "The Cedars-Sinai Medical Center in LA sticks in my mind," he recalls fondly. "I enjoyed being surrounded by the good-looking young nurses in short skirts and bobby socks. Perhaps they allow only pretty nurses to work in Hollywood!"
Nik is adamant that having epilepsy has never prevented him from doing anything he wanted in life. He puts his determination down to his parents. "My mother was a nurse in the war, so had witnessed some horrific stuff. She wasn’t scared by my epilepsy as I know some other mothers are. My parents didn’t want epilepsy to affect my life, plus I was one of five children so they probably weren’t too worried about losing one!
"On another occasion, at the Virgin offices, I fell through a plate glass window. Richard Branson thought I was a goner because I was cut all over. There was blood everywhere. I don’t remember any of this but apparently Richard had everything cleared up in seconds. He just sprang into action."
About 10 years ago, Nik's seizures stopped entirely. He is now off his medication.
So what's next for Nik? "Well, I would love to make a film on epilepsy," he say. So watch out for it at a screen near you, because Nik Powell is a man who makes things happen.
Paul Clark, a father of two from Essex, developed epilepsy in his thirties. He was surprised to discover the likely cause.
"Discovering I had epilepsy at the age of 33 was a massive shock to the system and it has changed my life completely. It started when I returned to work after the Christmas break. I began collapsing without warning. I would start to feel really hot and just go down like a sack of potatoes. I would be out for up to a minute and wake up in a cold sweat feeling exhausted and really sick.
"This happened five times in two weeks and, even though I was checked out by ambulance staff, an A&E doctor and my doctor, no one could identify what was causing it.
"Then I collapsed in a bar and cut my head quite badly. An ambulance took me to A&E and I had another seizure in front of a doctor. When I came round, she told me I was epileptic. I felt a mixture of relief and shock. It was serious but at least I knew what I was dealing with.
"The following day, I met an epilepsy nurse who explained that I would have to change my lifestyle. I had to surrender my driving licence and stop cycling and swimming. At home I had to avoid baths and stop carrying my new baby daughter, Safia, until the seizures were under control.
"The drugs are now working efficiently and I'm getting used to the fact that I can't do anything without thinking, ‘What if I have a seizure?’ It's impossible to know for sure what's behind it, but my three-year-old son, Sol, has never slept well and the long-term effects of sleep deprivation could be a factor. The doctors say that's the only reason that they can come up with, and apparently lack of sleep is a surprisingly common trigger. My poor partner, Michelle, has been brilliant. She now deals with the children on her own during the night because I need more rest."
Stephen and Denise's story
For Stephen and Denise Wottrich, epilepsy is a family affair. They have similar forms of epilepsy, and at its worst it can cause up to 10 seizures a day. They say learning to look after each other has made them stronger.
Stephen's epilepsy began in his early teens. He was involved in a serious car accident, but doctors still don't know whether this is connected to his epilepsy.
Despite having seizures regularly, Stephen has lived a normal life. He joined the army and was sent to Germany. But the next day he was sent back to the UK, where he joined the civil service.
"I had wonderful work mates," he says. "They'd look after me during a seizure, then I'd wake up and get back behind my desk again. Occasionally I'd have to have a day off but I'd much rather work than not."
Denise's epilepsy also started early. "One day when I was 10, I collapsed in school assembly," she says. "I was taken to a specialist who diagnosed epilepsy." Again, nobody knew why the epilepsy had started.
Denise, too, refused to let her condition hold her back. She worked in the Hampshire Constabulary and lived with her parents until she met Stephen.
"She had been moved into my room in an epilepsy unit and I hadn't been told," says Stephen. "I came in to find her mum going through my underwear, which she assumed a former patient had left behind. But all I could see were Denise's beautiful eyes."
Neither Stephen nor Denise gets any warning signs, such as auras, before a fit. "But I can tell when Denise is going to have one, and she can tell when I'm going to have one," says Stephen. "I can sometimes stop her having one by rubbing the back of her neck and talking to her. We know each other's epilepsy very well."
When a seizure comes on, they make each other comfortable, ensuring that there's nothing around that could cause an injury.
So far, drug treatments haven't had much effect on the couple. Stephen says, "I’ve tried everything going," as has Denise. But they don't let their epilepsy get them down.
"I’m not saying I don't get depressed," says Denise. "Sometimes I think I must have done something very wrong to have this disease. But Stephen says that's not true. He says that we've been given epilepsy because we're strong enough to cope with it. He says we're special and I believe him."
The couple say that having epilepsy shouldn't mean you need to shut yourself away from the world.
"Most of the time, I've met with nothing but kindness when I've had a fit in public," says Denise. "Some people just stare but most of the time people want to help. I've met some wonderful people."
She adds, "It's important to talk to family and friends about your condition. Some people are afraid of epilepsy, but you can help educate them if you learn about it yourself. Be as independent as you can. Don't hide from your epilepsy. One in 200 people has it in some form, and it's nothing to be ashamed of."