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 you have had more than one seizure, and your doctor thinks it’s likely 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?
Sometimes, the doctor will be able to tell if there is a clear cause for the epilepsy. Possible causes of epilepsy include:
- A brain infection, such as meningitis
- Severe head injury
- Problems during birth which cause a baby to get less oxygen
But in over half of all people with epilepsy, doctors don’t know what caused it. Some people may have a family history of epilepsy, suggesting that they may have inherited it. Scientists are trying to find out more about how epilepsy might be inherited.
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.
“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. 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.
“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?
Seven out of 10 people with epilepsy can have their seizures fully controlled by the right treatment. 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 helps stop or reduce the number of seizures.
There are many different epilepsy medicines. Your specialist will recommend the best one for you. They should let you know how the medicine works and what the possible side-effects are. You will usually start on a low dose and increase it step-by-step, until it’s at a dose that is going to work best for you.
Everyone is different, and some people find they don’t get on with a particular medicine. If this happens to you, you and your doctor could see if a different medicine would be better for you.
“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.
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.
Can I still take part in sports and leisure activities?
Having epilepsy shouldn’t usually stop you taking part in sports and leisure activities. If you have seizures, you might need to take some extra safety measures. For example, if you go swimming, take someone with you who knows what to do if you have a seizure in the water.
“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.”
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.
Can I die because of my epilepsy?
It is possible to die from epilepsy, but most people don’t die because of it. Even though it is a small risk it is real, and one we think it’s important to know about. People can die as a result of a seizure itself. Or they can die because of an accident caused by a seizure. In some cases, there is no clear reason why a person with epilepsy has died. When this happens, it is called sudden unexpected death in epilepsy (SUDEP).
It’s important to remember the risk of dying because of epilepsy is low, and there are things you can do to lower the risk even more. Taking your epilepsy medicine regularly, taking steps to keep yourself safe, and talking to your doctor about any concerns about your epilepsy can all help.
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.
“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.
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.
“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.
How can I take control of my epilepsy?
Read our tips to help you manage your epilepsy.
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