This brochure gives an overview of epilepsy, living with epilepsy and the support you can get from Epilepsy Action.
Newly diagnosed with epilepsy – your guide
Getting a diagnosis of epilepsy can be overwhelming. With so much information to take in, it can be hard to know where to start.
This is our guide to help you think about your next steps, whether that’s learning about epilepsy, finding tips to help you manage your condition or coming to terms with the diagnosis.
Is this guide for me?
This guide is aimed at adults with epilepsy. We have separate information for:
- Parents of children with epilepsy
- Just for kids – Children with epilepsy aged 4-11
- The Epilepsy Space – Young people
Topics in this guide
Find out about epilepsy
Epilepsy is a condition that affects the brain, causing seizures. It’s more common than you might think: around 630,000 people in the UK have epilepsy. That’s around 1 in every 100 people.
Key facts:
- Anyone can have a one-off seizure, but this doesn’t always mean they have epilepsy. When someone has epilepsy, it means they have a tendency to have epileptic seizures
- An epileptic seizure happens when there’s a sudden burst of abnormal electrical activity in the brain
- There are lots of different types of seizures, each with different symptoms
- People can develop epilepsy for many reasons, including brain damage, infection and genetics, but often doctors can’t find a cause
- 1 in 4 people newly diagnosed with epilepsy are older adults aged over 65
- Medicine is the main treatment, but there are other possible treatments if medicine doesn’t work
Watch our video for a brief introduction to epilepsy or visit our webpage – What is epilepsy?
What to expect from diagnosis and treatment
If you are still going through the process of getting a diagnosis, our section on diagnosing epilepsy explains how it’s diagnosed and some of the tests involved.
If your doctor diagnoses you with epilepsy, they should tell you what type of seizures you have, and the name of your epilepsy type or syndrome.
How will my epilepsy be treated?
The main treatment for epilepsy is medicine to stop your seizures, or reduce how often they happen and how severe they are. You may hear these medicines called anti-seizure medications (ASMs) or the older term anti-epileptic drugs (AEDs). To keep things simple, we call them epilepsy medicines.
There are lots of different epilepsy medicines. Your specialist should explain which medicines may be suitable for you and tell you about any possible side effects.
Find out more about treatment with epilepsy medicines:
- Taking epilepsy medicine
- Epilepsy medicines available in the UK
- Side effects and interactions
- Switching between different versions of epilepsy medicines
Medicine helps most people with epilepsy have fewer seizures or stop having seizures completely. Around half of people with epilepsy find that their seizures stop completely with the first 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.
Around a third of people with epilepsy have seizures that don’t stop with epilepsy medicine. If medicine does not work well for you, your specialist might suggest some other treatment options. These include:
Managing your epilepsy
When you are first diagnosed with epilepsy, you might feel helpless or like things are out of your control. But you have a very important role in managing your epilepsy and making decisions about your treatment.
Here are some things you can do to help you manage your epilepsy.
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Talk to your healthcare professionals
A wide range of healthcare professionals might be involved in your care. This includes the following.
GPs
GPs have a role before and after diagnosis, including:
- Referring to specialist(s)
- Prescribing medicine(s)
- Support to help you manage your epilepsy
- Identifying any new health issues
Pharmacists
Your prescriptions will be collected from a pharmacist. Pharmacists provide the following services:
- Dispensing NHS prescriptions
- Repeat prescription services (with agreement from your GP)
- Emergency supplies of medicine (subject to the decision of the pharmacist)
- Non-prescription medicines like paracetamol
- Disposal of unwanted or out-of-date medicines
- Advice on treating minor health concerns and healthy living
- Helping you to understand the correct dose and how often a medicine needs taking
People who take epilepsy medicine are entitled to get all their NHS prescriptions free in the UK. Find out more about accessing free prescriptions.
Epilepsy specialists
An epilepsy specialist is the doctor you see at hospital about your epilepsy.
Epilepsy specialists diagnose epilepsy and plan your epilepsy treatment and care. Who you get referred to will depend on what is available in your area.
If you are aged under 18 your specialist is likely to be a paediatrician (a doctor who treats and cares for children) with experience of diagnosing and treating epilepsy.
For adults whose epilepsy and seizures are not controlled the epilepsy specialist is likely to be a neurologist. This is a doctor specialising in the diagnosis and management of conditions affecting the brain and nervous system, including epilepsy.
The role of an epilepsy specialist can include:
- Making a diagnosis
- Providing information
- Arranging access to an epilepsy specialist nurse, if available in your area
- Making decisions about referrals for tests or to tertiary services
- Working with you to find the right treatment
- Epilepsy healthcare reviews
- Helping with the move (transition) from children’s (paediatric) to adult services. To learn more see the page about transition
Epilepsy specialist nurses
If available in your area an epilepsy specialist nurse (ESN) is ideally part of your care. This is someone you can contact between scheduled appointments.
ESNs are trained and have experience in caring for people with epilepsy. They can provide a link between you and other people involved in your care.
An ESN can include:
- Make sure you are getting the right help and support from other healthcare professionals
- Liaise between services and visiting at home and school/college if necessary
- Provide information, emotional support, and referring to other professionals, such as for counselling
- Provide emergency medication plans and training
- Give advice about your epilepsy medicine(s)
- Run clinics
- Help with the move (transition) from children’s (paediatric) to adult services
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Ask questions
Your doctor or epilepsy specialist nurse should give you the information you need to make informed choices about your treatment. This should be tailored to your needs. So if you want information about something to do with your epilepsy, no matter how big or small, ask them.
We have a list of suggested questions to ask your doctor that includes tips to help you get the most out of appointments.
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Take your medicine regularly
For your medicine to work well, it’s important to have a steady supply of medicine in your body. Missing a dose can increase your risk of having a seizure. Your doctor should give you instructions on how much of your medicine to take and when to take it.
If you have any problems with taking your medicine, like side effects or difficulty swallowing tablets, talk to your specialist or epilepsy specialist nurse. They should be able to suggest changes to help. Our page on taking your epilepsy medicine has some suggestions to help make taking your medicine easier.
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Know your rights
There are guidelines about the standard of treatment and care you should get for your epilepsy. This includes how quickly you should get to see a specialist, and how often you should have a review of your treatment.
We explain more on our page about getting the right treatment and care. These pages also give tips on what to do if you’re not happy with your treatment and care.
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Ask for a care plan
Doctors should give you a care plan with details of the care and support they’ve agreed with you. We have a template care plan you could ask them to use.
Download a copy or order a free copy below.
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Know your triggers
You might find that some things make you more likely to have seizures. These are often called triggers. Possible triggers include stress, not sleeping well and drinking too much alcohol. A very small number of people have seizures triggered by lights that flash or flicker.
Avoiding your triggers can help you to have fewer seizures. But not everyone is able to identify a trigger for their seizures.
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Keep a seizure diary
Keeping a seizure diary can help you and anyone involved in your epilepsy care see if your medicine is working, and if there is a pattern to your seizures. It can also help you to find out if anything triggers your seizures. Some people use an app on their phone. If you prefer a paper diary you can download ours or order a free copy below.
Questions for your doctor
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About your epilepsy
- Why do you think I have developed epilepsy now?
- Has my epilepsy got a particular name?
- What is the outlook for my epilepsy?
- Is anyone else in my family likely to be affected?
- What possible triggers are there for my seizures?
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Treatment
- How does epilepsy medicine work?
- When should I take it?
- Must I take it exactly as stated?
- What are the possible side effects of my medicine?
- Which side-effects are important to see you about?
- What will happen if my medicine doesn’t work?
- What happens if I miss a dose, am sick, or have diarrhoea?
- Is my medicine safe to take during pregnancy?
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Safety
- Would I ever need urgent medical attention for my epilepsy?
- How should people around me keep me safe if I have a seizure?
- Are there any over-the-counter medicines that I would need to check about before taking them?
- Can you explain how the driving regulations will affect me?
- Is there anything it’s not safe to do?
- Am I at risk of sudden unexpected death in epilepsy (SUDEP)? What can I do to reduce the risk?
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Care plans
You might want to discuss an epilepsy care plan with your doctor. This is a booklet that can be filled in and updated by you and any professionals you see about your epilepsy. You can use it to make a note of things such as:
- What happens to you during a seizure
- How long you take to recover from a seizure
- How long your seizures normally last
- What to do if your seizures last longer than usual
- Anything that makes your seizures more likely
- Which epilepsy medicine you take
- The details of your doctors
Download an epilepsy care plan booklet.
Our support for you
We’re here to support you, through all stages of your epilepsy journey. Here are some of the services we offer:
Useful downloads
How will epilepsy affect my life?
Having epilepsy affects everyone in different ways, but there are some common concerns that we know affect a lot of people when they are first diagnosed.
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Driving
If you have a driving licence, you’ll need to stop driving and let the driving agency know that you’ve been diagnosed with epilepsy. We know that for a lot of people, having to stop driving is one of the hardest parts of getting an epilepsy diagnosis.
Key facts
- People with epilepsy can get their driving licence back once they meet the medical standards for driving
- For most people this means being seizure free for 12 months
- There are different rules for sleep seizures and seizures that don’t affect your awareness
- If you’ve had to give up your driving licence, you can get free or discounted bus and train travel
- You might be entitled to help with work-related travel costs from Access to Work
Find out more:
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Work and money
You might be worried about what impact your epilepsy will have on your job, or that it will stop you finding work. It’s important to know that employers have a legal duty to treat you fairly and not discriminate against you because of your epilepsy.
We’ve got more information about your rights when working or looking for work and also the laws that protect you from discrimination.
If your employer needs to learn more about epilepsy and how to support you, ask them to take a look at our employer toolkit.
We know that having epilepsy can bring financial worries, especially if you can’t work or need extra care and support. You might be able to claim benefits to help. Visit our benefits page to find out what benefits are available, and where to get support with claiming them.
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Safety and independence
Seizures can put you at risk of accidents and injury, so it’s a good idea to think about safety, especially until your seizures are well controlled. This doesn’t always mean you have to stop doing the things you enjoy or give up your independence. Often, there are simple safety steps you can take to make things safer.
Our safety advice includes some practical tips to make activities safer, and guidance on how to weigh up risks while still having a good quality of life. We also have information about how family members can help keep you safe during a seizure.
Your specialist should give you individual advice about the risks involved with your epilepsy. One important risk they should discuss with you is the small risk of dying from epilepsy, including sudden unexpected death in epilepsy (SUDEP). Our page on epilepsy-related deaths and SUDEP talks about the risks and how to reduce them.
Keeping you safe during your seizures
You might want to make sure that family, friends and work colleagues know how to keep you safe if you have a seizure. We have lots of information to help, including free posters and leaflets and an online course.
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Family life
If you have children, you might be unsure about whether to tell them about your epilepsy, and how to explain it. We think it’s important for children to know what epilepsy is and that it’s nothing to be afraid of. When you are ready to tell them, our children’s books can help you with that conversation.
We also have advice on looking after a baby or young child when you have epilepsy.
If you want to have children in the future, having epilepsy should not stop you. Our guide to having a baby covers planning a baby, pregnancy, birth and breastfeeding.
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Older adults
If you have been diagnosed with epilepsy later in life, you are not alone. Out of all age groups, the highest number of people receiving a new epilepsy diagnosis are over 75.
Some conditions linked to epilepsy are also more common in older people, such as stroke or dementia. Your doctor should be able to tell you whether there’s a known cause for your epilepsy.
There may be some extra things to think about if you have epilepsy and are an older person:
Taking medicines for more than one condition
Some epilepsy medicines affect treatments for other conditions. If the doctor who prescribes your epilepsy medicines knows about everything else you are taking, the risk of this happening is small. Your pharmacist can double check your prescriptions and any side-effects for you too.
Bone health
Some people taking epilepsy medicines are at risk of having weaker bones. Osteoporosis is also more common in older people. We have more information about bone health and you may want to think more carefully about safety and managing your risk of falls
Living independently
You may be worried that you can no longer live independently. If you lived by yourself before, there’s no reason why you shouldn’t now. You’re less likely to have a seizure if you’re taking your epilepsy medicines. You can also follow safety advice to reduce any risks.
Looking after others
If you are concerned about looking after grandchildren, we have advice on looking after a baby or young child.
Coming to terms with your epilepsy
It can take time to adjust to a diagnosis of epilepsy. This might be true for you, and people who care about you like family and friends.
You might feel lots of different emotions. These are just a few that people have told us about:
- Shock and disbelief – some people find the diagnosis hard to accept and question whether it’s right
- Relief – some people feel relieved to have an explanation for their symptoms, especially if they’ve been happening for a long time
- Anxiety – about having seizures, taking medicine, or how epilepsy will affect their life
All these emotions, and many others, are completely normal. Acknowledging the emotions you are going through, and talking to people about them, can help. You could talk to people close to you, or join one of our talk and support groups to meet other people with epilepsy. We have a befriending service that provides somebody to listen, if you are going through a difficult time. Our helpline is also here to offer advice and answer your questions about epilepsy.
Many people find that with time and support, they learn to manage their epilepsy and live well with the condition. Our online course, Epilepsy and your wellbeing, looks at ways to manage your epilepsy and improve your general wellbeing. This can help you to feel good and function well.
What can I do if I’m struggling to come to terms with my diagnosis?
For some people, it can take longer to come to terms with the diagnosis, and feelings of anxiety and low mood might not go away. If you find this is the case for you, talk to your GP, specialist or epilepsy specialist nurse, as they will be able to suggest ways to help. You can also visit our pages on anxiety and depression for more information and sources of support.
Hear from others
We asked people with epilepsy about their experience of living with the condition, and what advice they would give to someone who has just been diagnosed.
Here’s what they told us:
“Rest when you need to, cry when you need to, laugh when you can – a lot! I’ve also been blessed with a brilliant neurologist, who has found the right balance of medication to get my seizures under control.”
“Don’t let it rule or ruin your life, hard to do at first, as I know only too well. But talking it through with family and friends, can and will help you to come to terms with it.”
“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.”
“Know the importance of the condition and taking your meds, but don’t let it define you. Know the precautions and changes you need to take, but don’t let it consume you or worry about it. Just be aware and mindful. It’s been 17 years since diagnosis and I still have to work at finding the balance but it’s not a burden.”
“Live your life as if your next seizure could be tomorrow, but never live your life as if that seizure should mean you have to wrap yourself in cotton wool.
If you can live with little adjustments, medical ID, free or discounted travel instead of a driving licence, showers instead of baths… then no matter when your next seizure is, you’ll live a full life that’s always going to be your normal life no matter if you’re seizure free or not.”
Get involved
Here are some ways you can get involved with our work, helping us to support more people with epilepsy
This information has been produced under the terms of Epilepsy Action's information quality standards.
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