Epilepsy

Symptoms of epilepsy

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's 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 and not being aware of what you're doing

A seizure usually lasts a few seconds or minutes, and stops by itself.

You might be aware of having a seizure and remember it afterwards, or you might not.

Symptoms of epilepsy often start in young children and people over 50, but it can happen at any age.

Epileptic seizures are different from febrile seizures, which can happen in children when they have a high temperature.

How epilepsy is diagnosed

If you or your child have had a seizure you'll need to see a specialist doctor. They'll check what caused it and whether you might have epilepsy.

They'll ask about what happened before, during and after the seizure. If someone else saw the seizure, it can help to bring them with you to your appointment.

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 scan or CT scan
• blood tests
• genetic testing

Having a seizure does not always mean you have epilepsy, as seizures can have other causes. You'll usually be diagnosed with epilepsy if you've had more than 1 seizure, or if tests show you're at risk of having more seizures.

Types of epileptic seizure

There are different types of epileptic seizure. They can affect people differently.

You may have only one type of seizure, or more than one. Your specialist may need to monitor your symptoms and tests results to tell you which type you have.

The main types of epileptic seizure are:

• tonic clonic seizures, where you become unconscious and may fall, your muscles get stiff and your body jerks and shakes
• tonic seizures, where your muscles suddenly get stiff and you may fall, then recover quickly
• atonic seizures, where your muscles suddenly go floppy and you may fall, then recover quickly
• absence seizures, where you briefly lose awareness of what's going on around you
• focal seizures, where you have unusual feelings, sensations or movements
• myoclonic seizures, where your muscles briefly jerk

Treatment for epilepsy

If you have epilepsy you'll be supported by your GP and a team of specialists. You'll have check-ups at least once a year.

Your team will work with you to agree a care plan that includes details of the care and support you need. The care plan will tell your family or carers what to do when you have a seizure.

Medicines for epilepsy

The main treatment for epilepsy is medicine to prevent seizures, called anti-epileptic or anti-seizure medicine.

You may also be given medicine to use as emergency treatment if you have a seizure that lasts longer than usual. A family member or carer will need to give this to you.

There are different anti-epileptic medicines. The medicine recommended for you depends on the type of seizures and things like your age, sex and any other conditions you have.

You may need to try different medicines to find what works for you.

If you have not had a seizure for 2 years, your specialist may suggest you try stopping your treatment by gradually reducing the dose. Do not change your dose or stop taking your medicine without talking to your specialist.

If you take medicines for epilepsy you're entitled to free prescriptions for all your medicines.

Other treatments

For most people medicines work well to prevent seizures. Rarely, you may need other treatments. These can include:

• surgery on your brain
• putting a small electrical device under the skin on your chest to help reduce seizures (vagus nerve stimulation)
• a specialist diet that can reduce seizures (ketogenic diet)

Things you can do to help with epilepsy

If you have epilepsy there are things you can do to keep yourself safe and reduce the risk of seizures, if they're not completely controlled by your medicine.

How epilepsy affects your life

Epilepsy affects everyone differently. It can be a life-long condition, or it can get better. How it affects you depends on the type of seizures you have, how often they happen and how well your treatment works.

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

Seizures are not usually harmful, although they can cause accidents or injuries. The risk of seizures may affect the type of work or activities you can do, and you may need to take extra safety measures.

Risks of epilepsy

An epileptic seizure usually stops by itself and does not cause any lasting problems.

Rarely, a seizure can last a long time, or you may have several seizures without recovering in between. This is called status epilepticus, and needs urgent treatment to prevent damage to your brain.

There's also a small risk of dying suddenly, called sudden unexpected death in epilepsy (SUDEP). But this is rare, and epilepsy treatment can reduce the risk.

Epilepsy and pregnancy

You can have a healthy pregnancy if you have epilepsy. But there's a chance you'll have more seizures in pregnancy. You may need extra appointments and tests.

You might also need to change your medicine as some epilepsy medicines are not safe to take in pregnancy.

If your partner takes epilepsy medicine, they may need to change their medicine. This is because some epilepsy medicines can affect sperm, which could harm your baby if you get pregnant.

If you're planning to get pregnant or you find out you're pregnant, keep taking your medicine but speak to your specialist team straight away to review your treatment.

Causes of epilepsy

Epilepsy happens when the normal electrical activity in your brain changes.

It's thought that epilepsy is often related to the genes you inherit from your parents, or to changes in your genes.

It's sometimes caused by damage to your brain, for example after a head injury, a stroke or an infection. But for many people it's not clear what causes it.

Help and support for epilepsy

As well as support from your healthcare team, you may find it helpful to get support from other people with epilepsy, either at a local support group or online.

There are also national charities that can offer support and information about epilepsy.

Epilepsy Action

Information and support for anyone affected by epilepsy.

• Website: www.epilepsy.org.uk
• Helpline: 0808 800 5050
• Epilepsy Action: face-to-face groups
• Epilepsy Action: online groups

Epilepsy Society

Information and support for anyone affected by epilepsy.

• Website: www.epilepsysociety.org.uk
• Helpline: 01494 601 400
• Epilepsy Society: just diagnosed
• Epilepsy Society: first aid for epileptic seizures

Support Dogs

Charity providing support dogs for people with conditions including epilepsy.

• Website: www.supportdogs.org.uk
• Support Dogs: epilepsy seizure alert