Just diagnosed

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.

Some people have seizures where they lose consciousness, may fall down, and shake. Other people might go ‘blank’ and stare for a few seconds, or become confused, wander around, or behave in an unusual way. 

Some people have seizures that other people don’t notice, but which affect their senses or how they feel. Some people have more than one type of seizure. 

The type of seizure, and how long they last for, is usually fairly constant for each person, but can change over time. Learning what type of seizures (and ideally, what type of epilepsy) you have can help you and your doctors decide what treatment is likely to suit you best.

Your neurologist, GP, or nurse may be able to tell you more about your epilepsy. You can also get information about epilepsy from us when you are ready for it. 

You may see different people to help you manage your epilepsy. This might include the following people:

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.

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. This is called photosensitive epilepsy and it affects around 3% of people with epilepsy. You may have had a test for photosensitive epilepsy if you had an electroencephalogram (EEG – a test which records the electrical activity of the brain) during your diagnosis.

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. 

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.

It might depend on how you are feeling about your diagnosis, and whether you are ready to talk to other people about it. Making decisions about who to tell at your own pace, may help you to feel more in control of what is happening.

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.

Some people you talk to may already have their own ideas about epilepsy. They might not understand that there are different types of seizures. 

Thinking about what you want people to know about your epilepsy might help you to feel prepared if they ask you questions. Giving them something practical to do might help them to feel that they are helping you. 

Perhaps saying something like “I have epilepsy and it would really help me if you could…” might help them to respond to you in a way that you would find helpful.

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 have triggers for their seizures (see above) such as stress or lack of sleep. Triggers can vary from one person to another, and not everyone will have triggers. If you can identify any triggers, you might be able to reduce the number of seizures you have by avoiding these triggers. 

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.

Will my epilepsy go away?

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.

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. 

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.

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.

The way family or friends react to your diagnosis may be just what you need, or you may find some reactions hurtful or unhelpful.

People around you may also feel shocked, frightened, worried, angry, or helpless about your diagnosis. They may not know very much about epilepsy. They may also need time to adjust and work out how they feel. 

What you need from them may also change over time. Family and friends can best support you if you are able to tell them clearly what you find helpful.

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.