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Information for people newly diagnosed

Cymraeg

If you or someone you care about has just been diagnosed with epilepsy, then this information is for you. You might have questions about what epilepsy is and how it’s treated, or about living with the condition. We hope this information helps to answer some of those questions.

We asked people with epilepsy about their experience of living with the condition, and what advice they'd give to someone who has just been diagnosed. You can read their comments throughout this information.

What is epilepsy?

Epilepsy is a condition that affects the brain. When you have epilepsy, it means you have a tendency to have epileptic seizures.

Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. You will usually only be diagnosed with epilepsy if your doctor thinks that there is a high chance you could have more.

Epilepsy can start at any age. There are many types of epilepsy. Some types last for a short time, and some types can last for the whole of your life.

How common is epilepsy?

"Don't be afraid to talk about it – there are more people out there with epilepsy or who know people with epilepsy than you think."

Epilepsy is one of the most common serious neurological conditions in the world. Epilepsy affects around 600,000 people in the UK. This means that almost 1 in 100 people in the UK have epilepsy.

What causes epilepsy?

Possible causes of epilepsy include:

  • Brain damage, for example damage caused by a stroke, head injury or infection
  • Brain tumours
  • Problems with the way the brain developed in the womb
  • Genetic factors

Your doctor should tell you if they know what’s caused your epilepsy. But for over half of all people with epilepsy, doctors can’t find a cause.

It’s thought that our genes play a part in who does and who doesn’t develop epilepsy. This may explain why some people develop epilepsy with no clear cause. Researchers have found a number of genes linked to particular types of epilepsy. There are many types that doctors suspect are genetic, but they don’t yet know which genes are involved.

What are epileptic seizures?

Electrical activity is happening in our brain all the time, as the cells in the brain send messages to each other. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up. The result is an epileptic seizure.

There are many different types of seizure. What happens to you during a seizure depends on what part of your brain is affected. With some types of seizure you remain alert and aware of what’s going on around you, and with other types you lose awareness. You may have unusual sensations, feelings or movements. Or you may go stiff, fall to the floor and jerk.

Find out more about the different types of epileptic seizures.

"My advice to anyone (or their carers) who is newly diagnosed is read as much as possible around the subject."

How is epilepsy diagnosed?

If your doctor thinks you may have epilepsy, they should arrange for you to see a specialist doctor with experience in diagnosing and treating epilepsy. This is usually a neurologist. The specialist will base their diagnosis on what they are told about your seizures by you, and if possible by someone who has witnessed your seizure. Usually, they will also ask you to have some tests. These tests may include blood tests, an EEG (recording of your brainwaves), and a brain scan. These tests can help the specialist decide if you have epilepsy, and if you do, work out the type and cause of your epilepsy. But there isn’t a single test that can prove if you do or don’t have epilepsy.

Find out more about epilepsy diagnosis.

"Don't be afraid to ask questions - no matter how trivial or daft you feel it is ask it anyway! If you don't understand get them to explain it until you do."

What is the treatment for epilepsy?

The main treatment for epilepsy is epilepsy medicine. You may hear these medicines called anti-epileptic drugs or AEDs. The medicine doesn’t cure epilepsy, but aims to stop or reduce the number of seizures you have.

There are many different epilepsy medicines. The one that’s best for you will depend on things like the type of seizures you have, your age and sex. Your specialist should explain which medicines may be suitable for you and why, and tell you about any possible side-effects. If you decide to take medicine, you will usually start on a low dose and increase it step-by-step, until you get to the recommended dose.

If your seizures don’t stop after getting to the full dose of medicine, talk to your specialist. They may suggest trying a different medicine instead. Many people find that their seizures stop with the first or second medicine they try. But some people need to try a few medicines before they find one that works well for them. And some people need to take two or more epilepsy medicines together.

"The only downside at the moment is the effect my medication has on my memory, but in the age of smart phones, I can plan things and record memories a lot easier."

There are also other ways to treat epilepsy, but they are not suitable for everyone. These include different types of epilepsy surgery, and a special diet sometimes used for children, called the ketogenic diet.

Find out more about different types of treatment.

Epilepsy specialist nurses
Your GP or specialist might arrange for you to see an epilepsy specialist nurse, if there is one in your area. These are nurses with training and expertise in epilepsy. The nurse can answer questions about your treatment and living with epilepsy. They can also provide a link between you and your specialist.

Can I have children?

If you want to have children, your epilepsy should not stop you. Most women with epilepsy have healthy pregnancies and give birth to healthy babies. If you are a woman and want to have children at some point, talk to your doctor or epilepsy specialist nurse. This is because there is a small risk that having seizures, or taking epilepsy medicine during pregnancy, can affect the health of you or your baby. The doctor or epilepsy specialist nurse can help you plan any pregnancies to make sure you and your baby will be as safe and healthy as possible.

If you do get pregnant unexpectedly, don’t stop taking your medicine. Instead, talk to your doctor as soon as possible, so they can get you the help and advice you need.

Find out more about epilepsy and having a baby.

Read our stories to help explain epilepsy to young children.

How can I stay safe?

Seizures can put you at risk of having accidents, so if your seizures are not completely controlled it’s important to think about safety. You may just need to make a few simple changes to make your normal activities safer. For example, you could drown if you had a seizure in the bath and there was no one there to make you safe, so you might choose to have showers instead. And if you go swimming, take someone with you who knows what to do if you have a seizure in the water.

Find out more about safety for people with epilepsy.

"You can still lead an absolutely normal life with it, you can still continue to do what you used to. Don’t let it stop you from doing new things either."

Can I die because of my epilepsy?

Having epilepsy comes with certain risks. One small but important risk to know about is the risk of dying from epilepsy. Knowing about it means you can take steps to reduce your risk.

People can die from a seizure itself, or from an accident caused by a seizure. But in some cases there’s no clear reason why a person with epilepsy has died. When this happens, it’s called sudden unexpected death in epilepsy (SUDEP). SUDEP happens in around 1 in every 1,000 people with epilepsy.

Although no-one knows the exact cause of SUDEP, research has shown there are some things that make you more at risk. The biggest risk factor is having frequent tonic-clonic seizures. These are where you lose consciousness and your body shakes. People who have other types of seizure, and people who have very few seizures, are less at risk.

The main way to reduce your risk of both SUDEP and dying from seizures or accidents is to have as few seizures as possible. Taking your epilepsy medicine as prescribed, not drinking too much alcohol and asking your doctor for regular epilepsy reviews can all help.

Find out more about ways to reduce the risk of SUDEP.

Can I drive?

The law says if you have a seizure you must stop driving and inform the driving agency. This is to protect you and others on the road.

You will usually have to be seizure free for 12 months before you can get your driving licence back, but there are different rules depending on the type of seizures you have.

Find out more about the epilepsy driving rules.

Did you know? - If you are not allowed to drive because of your epilepsy, you can get free or reduced price bus and rail travel. If you work, you may also be able to get help with work-related travel costs through the Access to Work scheme. Visit our benefits section to find out more.

"I don't drive now – I cycle. But I see all the wonderful things around me that I missed while rushing around in the car."

Will having epilepsy stop me doing certain jobs?

All jobs, except the armed forces, are open to people with epilepsy. Legally, employers can’t use your epilepsy as a reason not to employ you, or to dismiss you, unless they have very good reason. They could legally refuse to give you a job if you are still having seizures and this would put you or others at risk (for example, working at heights).

If your epilepsy makes it difficult for you to do your job, your employer may be able to make changes at work to help. This is called making reasonable adjustments.

Find out more about work and epilepsy.

What are my legal rights?

The equality laws in the UK protect disabled people from being treated unfairly because of their disability. You are considered disabled under the equality laws if your epilepsy has a substantial effect on your day-to-day activities, or would do if you were not taking epilepsy medicine. The laws cover work, education and access to services.

Find out more about the equality laws and epilepsy.

"Don't let it hold you back from doing anything and be open about it. The more people talk about epilepsy the more awareness there will be."

Am I entitled to any benefits because of my epilepsy?

Some benefits you may be entitled to include:

  • Free prescriptions (if you take medicine to treat your epilepsy)
  • Free or reduced price bus and rail travel (if you can’t drive because of your epilepsy)

If your epilepsy limits your ability to work or means you need extra care and support, you may also be entitled to certain government benefits and grants.

Find out more about possible benefits.

How can I take control of my epilepsy?

Read our tips to help you manage your epilepsy.

Information with references

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Helplineon 0808 800 5050

Code: 
B145.03
Event Date: 
Wednesday 15 June 2016 - 09:24

Epilepsy Action would like to thank Naomi Baxter and Wendy Burton, epilepsy specialist nurses at Ipswich Hospital NHS Trust, and Professor Matthew Walker, consultant neurologist at the National Hospital for Neurology and Neurosurgery, for their contributions to this information.

They have declared no conflict of interest.

This information has been produced under the terms of The Information Standard.

  • Updated February 2019
    To be reviewed February 2022

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