- What’s the treatment?
- Will I get side-effects from my epilepsy medicine?
- How should I take my epilepsy medicine?
- Are there things I need to avoid?
- Why should I take epilepsy medicine?
- What are the risks of having seizures?
- What else can I do to look after myself?
- Moving to adult services
- First aid for seizures
What’s the treatment?
If you’ve had more than one seizure, your doctor will probably suggest you take epilepsy medicine. There are lots of different epilepsy medicines. The doctor will tell you which one they think is best for you. Epilepsy medicines don’t cure seizures. But they can keep them under control.
About half of all adults and teenagers with epilepsy find their seizures stop with the first medicine they try. If the first medicine you try doesn’t work, or you get side-effects, your doctor may suggest you try another one. Some people need to take more than one medicine to control their seizures.
Some people keep having seizures, even after trying a number of different medicines. If this applies to you, you might be offered other treatments, such as vagus nerve stimulation or brain surgery. Some people are referred to a dietician for the ketogenic diet. These treatments may not be available and are not suitable for everybody.
Will I get side-effects from my epilepsy medicine?
When you first start taking epilepsy medicines or you increase your dose, you might get side-effects like feeling tired or a bit dizzy or sick. Some people have told us that they get less side-effects over time, as their body gets used to the medicine. If the side-effects don’t go, make sure that you tell your GP or specialist about this.
When they prescribe your medicine, the doctor should explain how and when to take it. It’s a good idea to ask them what to do if you ever forget to take your medicine, or if you’re sick or have diarrhoea.
You’ll usually start on a low dose and increase it slowly over a few weeks. It’s important to take your medicine every day, at the times your doctor has told you. This is to make sure you have the right amount of medicine in your body all the time. Missing a dose could make you more likely to have a seizure.
You can help keep track of how well your medicine is working by keeping a seizure diary. You can write in it:
- When you’ve had a seizure and what type
- When you last increased the dose of your epilepsy medicine
- Any side-effects of your epilepsy medicine
- Anything else you think might be important
Then when you see the doctor, they can see straight away what’s been happening for you. And whether for example they might need to change your epilepsy medicine in any way.
Things that make it more likely that someone could have a seizure are called seizure triggers. Knowing about possible seizure triggers will help you to get the best seizure control you can. Some common seizure triggers:
- Not taking epilepsy medicine as prescribed
- Feeling tired
- Having an illness that causes a high temperature
Less common seizure triggers:
- Missing meals
- Flashing or flickering lights
- Menstruation (periods)
The best way to reduce the number of seizures you have is to take your epilepsy medicine exactly as your doctor has advised you. Having as few seizures as possible is likely to increase your sense of self-confidence and your choices about what you can do in your life.
When you’re old enough and want to apply for a provisional driving licence, you’ll need to have been seizure-free for12 months. So it’s worth remembering that taking your epilepsy medicine may make it possible for you to drive in future.
If your epilepsy medicine doesn’t seem to be working well for you, keep a note of what’s happening in your seizure diary. Bear in mind that the doctor will only be able to judge how well you’re doing on a certain dose of the epilepsy medicine if you’ve been taking it completely regularly and at the right times.
Most people recover well from their seizures. But there can be some risks of hurting yourself. Unfortunately, for some people there’s a risk of sudden unexpected death in epilepsy (SUDEP). People have told us that they feel it’s important to know about SUDEP even though it can be scary. The best way to reduce your risk of SUDEP is to have as few seizures as possible. Here are some ways you could do that:
- Take your epilepsy medicine exactly as your doctor tells you to
- Make sure you don’t run out of your epilepsy medicine
- Don’t stop taking your epilepsy medicine without talking to your doctor
- Avoid your seizure triggers wherever possible
Sometimes you might feel anxious, stressed or depressed about your epilepsy and the effect it seems to be having on your life. If that’s the case, you could have a look at our information on wellbeing. This is all about how to take care of yourself so that you can feel as good as possible. Many people tell us that when they look after themselves – for example by getting enough sleep and doing things to reduce their stress – they have fewer seizures.
Epilepsy Action has an interactive course on wellbeing. It aims to teach you how to take simple steps to manage your epilepsy and improve your wellbeing. It covers the links between epilepsy and wellbeing, seizure triggers, taking epilepsy medicine, memory and stress.
Think about talking to someone about how you’re feeling. Being able to talk to someone about your epilepsy can be one of the best ways of helping yourself. That way it’s less likely you’ll keep it all inside and feel like no-one understands you.
As well as talking to someone face to face, you might want to join the Tea Room. It’s an online community for young people with epilepsy between the ages of 13 and 19. Lots of people find it really helpful to talk to someone who is going through the same sort of things as them. It can make you feel a bit less like you are the only person in the world this is happening to.
If you have had epilepsy in childhood and your seizures continue, you’ll probably move from child to adult services. This usually happens when you’re about 16. But in some hospitals the process can start as early as 13 and in some places it can be as late as 18 or 19. The process of moving from child to adult services is known as transition.
Because the move can be a bit unsettling it’s really useful to be as prepared for this as early as possible. This can give you the chance to talk about anything that’s worrying you about the move, with your paediatrician or your epilepsy specialist nurse.
Some people have said that after the move into adult services they feel less ‘looked after’. But growing up and taking more control over your life is a natural stage for all young people. Moving into adult services might encourage you to explore ways of looking after yourself.
It’s a good idea to get your care plan sorted before the move. In a care plan you can put all the most important information about you and your epilepsy.
One in 3 hospitals in the UK now have a transition clinic for teenagers with epilepsy. This is a place where, for example, you might meet with your old and your new epilepsy nurse together. This could help to make sure that the adult clinic staff understand you and your epilepsy as well as possible.
You could ask if your hospital has a transition clinic. If they haven’t got one, you might want to ask if they’re thinking of setting one up! Many young people find these clinics really helpful for introducing them gradually to adult services.
If your seizures are well controlled, the doctor in adult epilepsy services will probably suggest that you start seeing your GP for your epilepsy care instead. This would include your annual review of your epilepsy.
Get your rights is a brilliant website specially aimed at young people. It helps you get the most out of your NHS service.
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 the Epilepsy Action Helpline on freephone 0808 800 5050.
Epilepsy Action would like to thank epilepsy specialist nurses Neil Williamson at University Hospital Lewisham and Ruth McNulty at St Luke’s Hospital, Bradford for their contribution to this information. They have declared no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated June 2018To be reviewed June 2021