Epilepsy: symptoms, causes, treatment and what to do in a seizure

The NHS says epilepsy is a condition that affects your brain and causes seizures. It cannot currently be cured, but treatment can often help manage it. Epilepsy affects everyone differently: it can be a life-long condition, or it can get better, and how it affects you depends on the type of seizures you have, how often they happen and how well treatment works.

For most people, the NHS says medicine works well to prevent or reduce seizures, and epilepsy has a small impact on daily life. Some people have seizures that are harder to control and need more support.

The NHS says usually the only symptom of epilepsy is having seizures. Symptoms of seizures can include:

• Your body becoming stiff or floppy.

• Suddenly falling to the floor.

• Jerking or twitching movements in your body.

• Peeing unintentionally.

• Losing awareness of what is around you: you may stare into space and not be able to respond normally.

• Unusual feelings or sensations, such as strange smells, numbness or tingling, changes in your vision, or suddenly feeling scared.

• Unusual behaviour, such as fidgeting or walking around without being aware of what you are doing.

The NHS says there are different types of epileptic seizure, that they can affect people differently, and that you may have only one type or more than one. Your specialist may need to monitor your symptoms and test results to tell you which type you have. A seizure usually lasts a few seconds or minutes and stops by itself, and you may or may not be aware of it or remember it.

The NHS says to call 999 if you think someone is having a seizure and:

• it is the first time it has happened;

• it lasts longer than is usual for them, or longer than 5 minutes if you do not know how long their seizures usually last;

• they do not recover as usual afterwards, or they have another seizure without recovering between seizures; or

• they have now had 3 or more seizures in 24 hours.

People with epilepsy do not always need to go to hospital when they have a seizure. The NHS says they usually have a care plan that says what to do, such as giving emergency medicine and when to call 999. If you know what to do and have been trained, you can follow the care plan.

The NHS says to ask for an urgent GP appointment or get help from NHS 111 if you think you or your child may have had a seizure for the first time and you did not go to hospital, or if you have had a seizure after having no seizures for a long time. It says to call 111 if you need advice for a child under 5.

If you or your child have had a seizure you will need to see a specialist doctor, who will check what caused it and whether you might have epilepsy. They will ask what happened before, during and after the seizure, and the NHS says it can help to bring someone who saw the seizure to the appointment.

The NHS says tests you might have include an electroencephalogram (EEG) to check electrical activity in your brain, an electrocardiogram (ECG) to check your heart, scans such as an MRI or CT scan, blood tests and genetic testing. Having a seizure does not always mean you have epilepsy, as seizures can have other causes. You will usually be diagnosed with epilepsy if you have had more than 1 seizure, or if tests show you are at risk of having more.

The NHS says you will be supported by your GP and a team of specialists, with check-ups at least once a year and a care plan that tells your family or carers what to do when you have a seizure.

The main treatment is medicine to prevent seizures, called anti-epileptic or anti-seizure medicine. You may also be given emergency medicine for a seizure that lasts longer than usual, which a family member or carer would need to give. The medicine recommended depends on the type of seizures and things like your age, sex and other conditions, and you may need to try different medicines. If you have not had a seizure for 2 years, the NHS says your specialist may suggest trying to stop treatment by gradually reducing the dose. Do not change your dose or stop taking your medicine without talking to your specialist.

For most people, the NHS says medicines work well. Rarely, other treatments may be needed, such as surgery on the brain, a small electrical device under the skin on the chest to help reduce seizures (vagus nerve stimulation), or a specialist diet (the ketogenic diet).

The NHS says epilepsy happens when the normal electrical activity in your brain changes. It is thought to be often related to the genes you inherit from your parents, or to changes in your genes. It is sometimes caused by damage to the brain, for example after a head injury, a stroke or an infection. For many people it is not clear what causes it.

Triggers are a separate matter. The NHS suggests keeping a diary to identify things that might trigger a seizure, such as tiredness, stress, your period, flashing lights, food or drink.

The NHS says symptoms of epilepsy often start in young children. If you or your child have had a seizure, you will need to see a specialist doctor to find out why. Epileptic seizures are different from febrile seizures, which can happen in children when they have a high temperature.

The NHS says febrile seizures usually affect children between 6 months and 6 years old, usually last 2 to 3 minutes, and are not the same thing as epilepsy. Children who have had a febrile seizure have a slightly increased chance of having epilepsy later in life, but this is rare. For a child's first seizure of any kind, call 999 or go to A&E, as the NHS advises.

The NHS says most people with epilepsy have a safe pregnancy and a healthy baby, but it is important to get medical advice if you are pregnant or planning a pregnancy. You may have no seizures in pregnancy or more than usual, and there may be an increased risk of a seizure during labour and after birth. You will usually be offered extra appointments and tests.

Some epilepsy medicines can affect a baby's development if taken in pregnancy, and there is also a risk if the baby's father is taking epilepsy medicine around the time of conception. The NHS says not to stop your usual medicines until you have talked to an epilepsy specialist, and to use contraception until you have had advice from a specialist if you or the baby's father are taking epilepsy medicine. It is usually safe to breastfeed while taking epilepsy medicine, but some medicines can pass into breastmilk.

The NHS lists things you can do to keep safe: make sure family and friends know what to do if you have a seizure, carry medical ID, make your home safer (for example carpets and radiator covers), consider an alarm, have showers instead of baths if you can, and think about safety when cooking, using tools or machinery, swimming or playing sports. It also says not to miss doses, not to change treatment without advice, and not to drink too much alcohol as it can increase the risk of seizures.

The NHS says that if you have had any type of seizure you must not drive and you must tell the DVLA. When you can start driving again depends on the type of seizure and when it last happened.

A seizure usually stops by itself and does not cause lasting problems. Rarely, a seizure can last a long time, or you may have several without recovering in between. This is called status epilepticus and the NHS says it needs urgent treatment to prevent damage to the brain. There is also a small risk of sudden unexpected death in epilepsy (SUDEP), which is rare, and epilepsy treatment can reduce the risk.

On the NHS, a first seizure leads to assessment by a specialist doctor, and epilepsy care continues with your GP and a specialist team with at least yearly check-ups. If you take epilepsy medicines and have a medical exemption certificate, the NHS says you are entitled to free prescriptions for all your medicines.

Some people also see a neurologist privately for assessment, tests such as EEG or MRI, or a second opinion. It makes sense to share any results and medicine changes with your GP and epilepsy team so your care plan stays up to date.