Just diagnosed

There are a number of common misconceptions surrounding epilepsy and epilepsy terminology. Anyone can develop epilepsy, at any time of their life. Epilepsy is not just one condition, but a group of many different ‘epilepsies’ with one thing in common: a tendency to have seizures which start in the brain. Epilepsy is a neurological condition, which means it affects the brain and the nervous system.

Epileptic seizures are usually sudden, last a short time, and stop by themselves. They can start when you are awake or asleep and can cause a change in awareness of what you are doing, your behaviour, or your feelings. There are many different types of seizure and the type of seizure you have depends on which part of your brain is affected and what that part of your brain controls.

Epilepsy is a very individual condition: some people will have it all their life, but for others they might have it just for a period of their life and their epilepsy might 'go away'. So for some, epilepsy is a long-term condition.

For some people certain situations can ‘trigger’ a seizure (make a seizure more likely to happen). Triggers are not the same as underlying causes, and can vary but include lack of sleep, stress, excitement, alcohol, and not taking your medication as prescribed. Flashing or flickering lights or certain visual patterns can be a trigger for some people with epilepsy, but this is rare.

Neurologist

During your diagnosis you will probably have seen a neurologist. Some neurologists specialise in epilepsy. It is the neurologist who will generally diagnose epilepsy and prescribe and start any treatment, such as medication. 

You might continue to see a neurologist while trying to get your seizures controlled, and you could also have ongoing regular reviews of your epilepsy with a neurologist. NICE (the National Institute for Health and Care Excellence) produces guidelines, and recommends that anyone who has a seizure is seen urgently (within two weeks). This is with a specialist to make a diagnosis and discuss treatment.

Epilepsy specialist nurse (ESN)

You might see an epilepsy specialist nurse (ESN), who can be a good link between you, the neurologist, and your GP. Specialist nurses might be involved in your treatment, and they may support you in other ways, such as talking to you about your epilepsy and how you are getting on.

General Practitioner (GP)

Your GP might also be involved in your epilepsy management. They are usually responsible for prescribing any ongoing treatment, and they are generally the first person you go to if you have any questions or concerns. Some GPs have a specialist interest in epilepsy. 

Other people

You might also see other people about your epilepsy, depending on how things are for you. This could include an occupational therapist, community nurse, or social worker.  

Your brain controls the way you function. Inside your brain millions of nerve cells pass messages via electrical signals to each other. During a seizure these electrical signals are disrupted, and this affects how you feel or what you do while the seizure is happening. Sometimes there is a clear cause for seizures, for example, if someone has damage to their brain from a difficult birth, an infection such as meningitis, a stroke, or a head injury. 

Epilepsy can be passed down from one or both parents (inherited), but in some cases it may be from a change that happens only in the person’s own genes. Some researchers now believe that the chance of developing epilepsy is probably always genetic to some extent.

Your doctor or neurologist may be able to tell you what has caused your epilepsy, but this is not always possible. Research continues into understanding more about why seizures happen in some people and not in others.

Epilepsy is sometimes referred to as a long-term condition, as people often live with it for many years or for life. Although generally, epilepsy cannot be ‘cured’, for most people, seizures can be ‘controlled’ (stopped), so that epilepsy has little or no impact on their lives. So treatment is often about managing seizures in the long-term. See our information on how doctors monitor epilepsy, your medication and therapeutic drug monitoring.

Medication

Most people with epilepsy take anti-seizure medication (ASM) to stop their seizures from happening. However, there may be other treatment options for people whose seizures are not controlled by ASM.

People with epilepsy are entitled to free prescriptions for their ASM and any other prescribed medication. This is called medical exemption. In Scotland, Wales, and Northern Ireland all prescriptions are currently free.

ASM and birth abnormalities

Some ASMs have a higher risk of causing birth abnormalities. Different ASMs vary in the risk they pose. The Medicines and Healthcare products Regulatory Agency (MHRA) has issued guidance on prescribing Topiramate to women, and Sodium Valproate to women and men under the age of 55.

Whether to tell other people about your epilepsy, who to tell, and when, is your choice. There might be some people around you who it may be useful to tell, so they can offer support.

Some people don’t know much about epilepsy, and may expect you to explain. It might be helpful to have some information that you could give to them to help them understand. You could give them your ID card or show them this information.

Relationships and sex

Some people are concerned about relationships and sex when they are diagnosed with epilepsy. Some worry that their relationships will change, or about how people will react to their diagnosis. 

Some may worry that they might have a seizure during sex or feel that having epilepsy might affect their sex drive (their interest in sex). Generally, seizures are no more likely to happen during sex than at any other time.

Sometimes epilepsy does change a relationship. Some people might need to rely more on those around them, both practically and emotionally. Relationships can change, as epilepsy can impact on the individual and those close to them. These changes can be positive – many people with epilepsy find that their relationships with partners, family, and friends can grow, be stronger, and become more supportive and encouraging.

For some women and girls with epilepsy, hormone level changes affect when their epilepsy starts, how often seizures happen, and whether their epilepsy goes away. Hormone levels change during puberty, through the menstrual cycle, during pregnancy, and during the menopause.

Some types of contraception can be affected by ASM, making it less effective in preventing pregnancy. Talking this through with your doctor is important to help you decide on the right contraception for you. If you are thinking of starting a family, it is essential to talk to your neurologist about your epilepsy treatment for your pregnancy and for when your baby arrives.

Getting specialist advice, or preconception counselling, before you become pregnant can help to keep you and your baby safe. Although the vast majority of women with epilepsy will have a healthy baby, some ASM can affect the development of an unborn baby. Risks depend on the type of ASM prescribed, the dose, and each individual situation, and they need to be balanced with seizure control. These issues will be considered when deciding whether to start treatment, and what treatment would be suitable. 

The Medicines and Healthcare products Regulatory Agency (MHRA) have announced some important changes to the way that the ASM sodium valproate is prescribed. These will affect both men and women under the age of 55 and girls of childbearing age. Find out more.

If you start taking ASM, your neurologist should plan for the possibility of you taking ASM long-term, even if you are not thinking about becoming pregnant at the moment.

Taking an active role in managing your epilepsy (‘self-management’) can be an important part of helping to reduce your seizures and feeling in control. Learning about how your epilepsy affects you, and being involved and able to make informed choices about managing your treatment, is all part of this. Having a good relationship with your healthcare professionals and your pharmacist can also help.

Some people choose to keep a diary of when their seizures happen, any triggers, any side effects, and how they feel.

Improving your overall wellbeing may also help to reduce the number of seizures you have. This could include having a balanced diet, keeping physically active, sleeping well, and finding ways to relax and manage any stress. Some people find complementary or psychological therapies help with their overall wellbeing. For some, just talking to someone who understands can help too.

How you may be feeling

People can react differently to a diagnosis. You might feel lots of different emotions. It may not be possible to think or feel positively, or you may feel fine one minute and upset or angry the next. Or you may feel relieved that what has been happening to you has a name and a treatment. 

A diagnosis of epilepsy can be hard to accept. Some people find it difficult to come to terms with, or feel worried, down, or anxious. It may change some things in your life but not necessarily forever. You might be feeling a sense of loss. It may be helpful to know that these feelings are all common. And to remind yourself that you are still the same person you were before the diagnosis and that support is available if you want it.

Many people need to take ASM, or other treatment, long-term to keep their seizures under control. However, for some people, their epilepsy goes into ‘spontaneous remission’ and seizures stop happening. This can depend on the underlying cause of seizures. If this happens for you, you and your specialist may decide together to gradually stop your treatment, and they can help you do this safely. You should never stop taking your ASM without medical supervision.

Keeping safe while having a full life, can be about balancing what is most important to you with what will keep you safe. If your seizures become controlled, your epilepsy may have little effect on what you do. Some activities, including some sport and leisure activities, carry more risk of accidents or injury if you have seizures. But they may be made safer with simple measures and by thinking about how your seizures affect you.

If during your seizures you become confused or do things that you don’t remember, you may want to think about what would help to keep you safe. Some people get a warning (when they know a seizure is going to happen) which may give them enough time to get to a safe place before a seizure happens.

Risks of injury are not always easy to avoid, and can be worrying to think about. But being aware of risks, and how you might be able to reduce them, might help you feel more in control of your epilepsy. Although seizures are usually short (a few seconds or minutes) and stop on their own, for some people seizures do not stop. This is called Status Epilepticus (Status) and the person might need emergency medical help to stop them.

For a small number of people, there is a risk of dying due to seizures (sometimes called SUDEP or sudden unexpected death in epilepsy).This can be frightening to read about but it is rare. A key way to reduce risks is to prevent seizures from happening, by taking your ASM as prescribed and having regular reviews. It can also be important to stay healthy, and avoid, where possible, any known trigger for you.

If you have a driving licence and you have a seizure, the DVLA regulations say that you must stop driving. For many people this can have a big impact and can be very difficult or upsetting. By law you are responsible for telling the DVLA about your epilepsy and returning your licence to them. This is the case whatever type of seizure you have had, whether you lost consciousness or not, and whether or not you are taking ASM. See our information on what the driving regulations mean for you.

If you can’t drive due to your epilepsy, you can get free or discounted travel on buses, trains, and tube. If you can’t get to work using public transport, you may be able to get financial help through the Access to Work Scheme. 

Whether epilepsy will affect your work depends on how your epilepsy affects you and what your job involves. For example, jobs which involve driving, working with machinery, near open water, or at heights, could be affected. Although you do not legally have to tell an employer about your epilepsy, it may be important for them to know so that they can keep you safe at work and treat you fairly.

To keep you and other employees safe at work, your employer might need to do a risk assessment of your work environment and the tasks involved in your job.

Whether or not you work, you may be entitled to claim benefits or other financial help. This will depend on how your epilepsy affects you and your financial situation.

Epilepsy is sometimes classed as a disability. While some people find the term ‘disability’ negative or a ‘label’ that doesn’t feel right, it can be useful to know what this term means and how it might help you to find support. The Equality Act 2010 is a law that aims to ensure that people are treated fairly and are not discriminated against. This applies to employment, education, and accessing services (such as using shops, health or leisure services). Groups specifically covered by the act include people with disabilities.

Epilepsy is considered a disability when it greatly affects someone’s ability to do everyday activities (such as concentrating or remembering things), over a long period.

Epilepsy is sometimes described as a hidden disability because it is not always obvious that someone has epilepsy unless they have a seizure.

Whether you feel that you have a disability or not, you are protected by the Equality Act if your epilepsy affects you in this way. Depending on how your epilepsy affects you, there may be help available, such as benefits or support at home.

There are many causes of epilepsy but some are more common in later life. As we age, the blood vessels that supply blood to the brain may become narrower and harder, which can affect the flow of blood, and therefore oxygen, to the brain.

The most common cause of seizures starting in later life are cerebrovascular, where there are changes or damage to the blood vessels around the brain. Some people who have had a stroke may have one or more seizures. However, this does not necessarily happen, and, often, seizures are not linked with strokes.

Many people who contact us say that having someone to talk to, who either has epilepsy, or knows about it, can be really helpful. For some, it can be an important part of coming to terms with a diagnosis of epilepsy.

You might already have people around you who can help and support you. If you would like to, there are various ways in which you can make contact with other people.

Social media

Connect with other people affected by epilepsy, and receive information and updates about our work, through our social media channels as follows: Facebook, Instagram or X.

Support groups

Some people find face-to-face support through meeting other people with epilepsy helpful. You could ask your GP or hospital if they know of any support groups locally.

Epilepsy Society Helpline

You, or your friends and family, can talk to our confidential helpline about what is happening and how you are feeling. They can give you time and space to talk things through and think about what you want to do. 

Epilepsy Society is grateful to Dr F J Rugg-Gunn, Consultant Neurologist & Honorary Associate Professor Clinical Lead, Chalfont Centre for Epilepsy, who reviewed this information.

Information updated: August 2024