- What’s the treatment?
- Will I get side-effects from my AEDs?
- Are there things I need to avoid?
- Why should I take AEDs?
- What are the risks of having seizures?
- What else can I do to look after myself?
- First aid for seizures
- Moving to adult services
What’s the treatment?
If you’ve had more than one seizure, your doctor will probably suggest that you take anti-epileptic drugs (AEDs). Once you’ve got to the right dose of the right drug, there is every chance that your seizures will stop, or at least happen less often. For most people this can happens quite quickly, for others it can take a while.
Will I get side-effects from my anti-epileptic drugs?
When you first start taking anti-epileptic drugs (AEDs) or you increase your dose, you might get side-effects like feeling tired or a bit dizzy or sick. After a few weeks these feelings should go. If the side-effects don’t go, make sure that you tell your GP or specialist about this.
It’s really important to increase the AEDs slowly and take them exactly as the doctor says. If you even miss one dose of your AEDs you might have a seizure.
It’s also a good idea to keep a seizure diary. You can write in it:
- When you’ve had a seizure,
- When you last increased the dose of your tablets
- Any side-effects or your AEDs
- 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 increase your AEDs.
For some people it is never possible to control all seizures. For these people there are other treatments that might be offered, such as vagal nerve stimulation or surgery.
Find out more about other treatments for epilepsy
Are there things I need to avoid?
Things that make it more likely for you to have a seizure are called seizure triggers. Knowing about possible seizure triggers will help you to get the best seizure control you can.
Here are some of the most common seizure triggers:
- Not taking epilepsy medicine as prescribed
- Feeling tired
- Not getting enough sleep
- Flashing or flickering lights
- Menstruation (periods)
- Missing meals
Most of this list might look to you like things teenagers do all the time! You might want to think about changing your habits a bit, to make sure you have the best seizure control you can. This is called self-management. If you do think about this, it could mean your parents are a bit less stressed about what you do. And it might help you feel more in control, especially if it means you don’t have as many seizures.
Why should I take anti-epileptic drugs?
The best way to get seizure control is to take your anti-epileptic drugs (AEDs) exactly as your doctor has told 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 are old enough and ready to apply for a provisional driving licence, you will need to have been seizure-free for 12 months. So if you’re not keen on taking your AEDs, remember that they may make it possible for you to drive in future. That might help.
If the first AED you take 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 are doing on a certain dose of the AEDs if you have been taking them completely regularly and at the right times.
What are the risks of having seizures?
Most people recover well from their seizures. For some people there is a risk of sudden unexpected death in epilepsy. This is also called SUDEP. People have told us that they feel it’s important to know about SUDEP even though it can be scary. The main things to know are the ways of making the risks as small as possible. Here are some suggestions;
- Do everything you can to get the best seizure control possible
- Take your AEDs exactly as your doctor tells you to
- Make sure you don’t run out of your AEDs
- Don’t stop taking you AEDs without talking to your doctor
- Avoid your seizure triggers wherever possible
Find out more about SUDEP
What else can I do to help myself?
Looking after your general health can really help with seizure control. 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 you, you might want to 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.
Find out more about epilepsy and wellbeing on our E-learning platform
This is 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 your wellbeing, seizure triggers, taking epilepsy medication, memory and stress.
Find out more about epilepsy and wellbeing on our advice and information pages
Above all, make sure you find someone you can talk to 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.
Moving to adult services
If you have had epilepsy in childhood and your seizures continue, you will probably have your care transferred into adult services. The move usually happens at 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.
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 nurse specialist.
Some people have said the move into adult services results in them feeling less ‘looked after’. However, 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.
Find out more about care plans.
If your seizures are well controlled the doctor in adult epilepsy services will probably suggest that your GP now provides your epilepsy care. This would include your annual review.
One in four hospitals 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 department staff understand you and your epilepsy as well as possible.
Make sure you ask if your department has a transition clinic. If they haven’t got one, you might want to ask if they’re thinking of setting one up!
Get your rights is a brilliant website specially aimed at young people. It helps you get the most out of your NHS service.