your epilepsy - now and next
A guide for teenagers and young people
If you have epilepsy, what does it mean to you?
You may feel OK about it, or you may have some questions or worries. Your epilepsy and your choices in life may feel like big issues. This guide looks briefly at what epilepsy is, treatment, sports and leisure, sex, drugs and social life. There's also information here about education, driving, getting work, and how you might feel about your epilepsy. You may want to look at some sections now, and other sections in the future. Epilepsy Society has more information about all these topics.
What is epilepsy?
Epilepsy is the tendency to have seizures that start in the brain. The brain uses electrical signals to pass messages between brain cells. If these signals are disrupted, this can lead to a seizure. Epilepsy is usually diagnosed when someone has more than one seizure that starts in the brain.
Seizures can vary a lot. They can affect your feelings, awareness or movement. Different seizures involve different things. These may include confusion, strange feelings, repetitive movements, 'blank' moments where you are briefly unconscious, muscle jerks, sudden falls, or convulsions (jerking movements while unconscious).
Sometimes other conditions can look like an epileptic seizure, for example fainting. Doctors may check for other conditions before you are diagnosed with epilepsy.
Treatment for epilepsy
The most common treatment for epilepsy is anti-epileptic drugs (AEDs). AEDs aim to stop seizures happening, but they don't cure epilepsy. For AEDs to work well, it is important to stick to your drug routine, and not change it without talking to your doctor first.
You may adjust well to your AEDs, or you may have side effects, like feeling tired or unsteady. Some side effects go once your body gets used to the drug. It can help to tell your doctor about any side effects.
It's my treatment, but who's in charge?
How you get on with the doctors you see for your epilepsy can make a big difference. Are you able to ask questions or discuss your treatment with your doctor? Being involved in decision-making can help you to feel more in control of your treatment.
At around 16-18, you may start seeing an adult specialist, usually a neurologist. This can be a good time for you and the new specialist to talk about your epilepsy, and adjust your treatment if necessary.
Do I really need AEDs? I've only had a few seizures
Doctors are not likely to prescribe AEDs unless they feel you need them. Although many people can have a seizure and be fine afterwards, having seizures can be risky. Seizures can really disrupt someone's life, they can cause injuries, and in some rare cases it is possible to die from a seizure. This sounds very scary but for most people with epilepsy, the risk of dying from a seizure is very low. Stopping or reducing the number of seizures helps to keep this risk low.
This is why taking AEDs in a regular routine is so important. If you are unhappy about taking them, you can talk to your doctor or specialist. They may be able to suggest a different AED or change the dose. They may also be able to tell you more about any possible risks around your specific epilepsy so you and your family can keep the risks of having seizures in perspective and not worry unnecessarily.
Sports, spare time and seizures
Going out and having fun is important to us all – so does epilepsy have to get in the way? Epilepsy is a very individual condition: how it affects you can be quite different from how it affects someone else. If you know that your epilepsy affects you in a particular way, you can often make your own decisions about what you can and can't do.
Can I still play football? What about swimming?
Most people with epilepsy can do most sports, including swimming, but it does depend on how your epilepsy affects you. Playing team sports like football can be fine but with all sports that involve other people, there is a risk of head injuries if you collide with someone. For some people a head injury could make their epilepsy worse. Some sports and leisure activities may be risky if you still have seizures, particularly swimming, other water sports or being at heights, but safety measures can reduce the risks in most cases.
Be realistic about what you want to do, what the possible risks could be for you, and how you can reduce those risks. For example, have a friend with you who know what to do if you have a seizure. Telling other people about your epilepsy, like your team coach or a lifeguard at the pool, means they can help you if you have a seizure.
TV and computer games
Most people with epilepsy can watch TV and play computer games without any problem. However, some people with epilepsy have photosensitive epilepsy which means their seizures can be triggered (set off) by flashing or flickering lights, or by seeing moving patterns like stripes or checks. This is not common - it affects up to 5% of people with epilepsy. You may be tested for photosensitive epilepsy when you have an EEG, a test that can help with diagnosing epilepsy.
If you do have photosensitive epilepsy, some kinds of flashing images, lights or patterns on computer games could trigger seizures for you. This will depend on what the images are, how close you are to the screen, how dark the room is, and whether you have any triggers for seizures that are specific to you. Computer games that have flashing images may carry a warning on the packaging.
Older TVs and computers with screens that flicker may be a problem for people with photosensitive epilepsy, but modern flatscreen computers and TVs either do not flicker at all, or have a flicker rate that is too fast to cause a problem.
Remember: at least 95% of people with epilepsy do not have seizures set off by flashing lights or patterns. If you’re not sure whether you have photosensitive epilepsy you could ask your GP or specialist.
What about theme parks, festivals or gigs?
Again, it depends on you and your epilepsy. Rides at theme parks, noise, loud music, crowds and late nights can get your excitement or stress levels rising, or can be tiring. For some people these situations could trigger a seizure, for other people they won’t.
Learning if your epilepsy has any triggers like these can help you make decisions about what you can do. It can also help your family or friends feel happier about the activities you would like to do.
Sex, drugs and social life
Sex and relationships
It's not unusual for people to worry about their sex life, whether they have epilepsy or not. Getting close to someone else can be great, but can also leave you feeling vulnerable. What if they go off me? What if something embarrassing happens? Do I tell them about my epilepsy?
You may worry about having a seizure during sex, but this is probably no more likely than having a seizure at any other time.
Going out with someone who you can really talk to, and who understands your epilepsy can be great. Sometimes it can be helpful for you to find out how they feel about your epilepsy too.
Contraception
Having safe sex protects you and your partner against unwanted pregnancy and sexually transmitted infections (STIs). There are lots of different contraceptive methods available.
For girls and women with epilepsy some types of 'the pill' can affect how some AEDs work. And some AEDs can affect how well the pill works. If you take AEDs, talking to your epilepsy doctor about contraception before you start having sex is important for two reasons: to avoid becoming pregnant, and to keep your seizures under control.
The Family Planning Association (opens in new window) can give you more information about safe sex.
Our page on women and epilepsy has more information about contraception and epilepsy.
Epilepsy and alcohol - do they mix?
Drinking alcohol is a personal choice. Having epilepsy doesn't necessarily mean you can't have a drink, but you can find out how many units of alcohol you are drinking and what your limits are. As a general guide:
1 unit = a 25ml single measure of spirits.
1 unit = one third of a pint of beer.
1 unit = two thirds of any 'alcopop'.
However, different drinks can have different strengths of alcohol.
It is usually recommended that people with epilepsy have no more than 1-2 units per day, for the following reasons.
- Some people with epilepsy find that drinking alcohol can trigger seizures; but not always while they're actually drinking. Often it's later during a hangover when your brain is dehydrated that seizures happen. Drinking water in between alcoholic drinks can help reduce the chances of a hangover.
- Vomiting (being sick) may affect the level of AEDs in your system, which may affect how well your seizures are controlled.
- Alcohol can disrupt your sleep, which can make seizures more likely if your seizures are triggered by tiredness.
- Alcohol does not mix well with some AEDs. For example, it can make some of the side effects of AEDs worse. The information leaflet that comes with your drugs should say if alcohol is not recommended. You could ask your doctor if you are not sure.
Drugs
Just because you're young it doesn't mean that you are interested in taking illegal drugs. But maybe you're more likely to think about it at this age. You might already know quite a bit about drugs and the risks of taking them, or you may have made a decision about what you'll do if you're offered drugs.
You might not know that taking cannabis, ecstasy, speed, cocaine and other recreational drugs can all increase the chance of having a seizure. Frank (opens in a new window) has more information about drugs.
Going out
Having a good time when you go out is important. But for some people a party lifestyle can make seizures more likely to happen, if their seizures are triggered by being tired from late nights, alcohol or drugs (see above). Flashing or flickering lights are only likely to trigger seizures if you have photosensitive epilepsy (PE).
"Once my friends knew what to do when I had a seizure, I could relax more when I went out. They felt better about it too."
School, college or university
If you’re at school, college or university and you have epilepsy, the Equality Act 2010 aims to make sure you are treated fairly by everyone involved in your education. This includes lessons, trips out, practical subjects and exams.
Wherever you are studying it might be useful for other people to know about your epilepsy. This means they can help you if you have a seizure at school or college. But you may want to choose who you tell about your epilepsy, and find a balance that you are happy with.
For some people having epilepsy won’t affect how well they get on at school, college or university. However, the following may apply to you.
- If you take AEDs and they make you feel sleepy or tired, it may be more difficult to concentrate or learn new information.
- After a seizure you might feel confused or tired so it’s important that you have time to fully recover. Your teacher or lecturer might go back over key information for you if you ask them. Or a friend might be able to explain what you missed.
Schools, colleges and universities are required to give you some support if you need it. If your epilepsy affects your school or college work, talking to a teacher or to the college about ways they can support you may be helpful.
Our pages on children and education and university and epilepsy have more information.
“Once I accepted I had epilepsy, I was able to get on with my life, making slight changes where necessary. I’m in my third year of Uni, get lots of help and support, and have a part time job. Be positive!”
Driving
Learning to drive
If you have had no seizures for at least one year, you can learn to drive a car or motorbike at 17. When you apply for your provisional driving licence, the DVLA (the UK body that licenses cars and drivers) will need to know about your epilepsy, even if you are not currently having seizures. The DVLA will ask you to fill in some forms, and they may contact your doctor to ask about your epilepsy before they send you your licence.
If you have a driving licence and have a seizure you must stop driving, and tell the DVLA. This means all types of seizures, including those where you may be conscious. This is the case whether you are on AEDs or not. They will ask you to return your licence to them. This can be a very tough thing to face, especially if it affects your freedom and independence.
However, if you have no more seizures for one year you can apply for your licence back.
More information about the driving regulations for epilepsy.
If you have only had one single seizure you may be able to apply for a new licence after six months.
More information about the driving regulations for a first, solitary seizure.
If you have a seizure in your sleep
If you have a seizure while you’re asleep (a nocturnal seizure) you must stop driving for one year, as above. However, if in the next three years you only have seizures while you’re asleep then you can apply for a new licence, even though you are still having seizures while asleep. This is the case whether you are on AEDs or not.
Public transport and help with travel costs
If you do not drive because of your epilepsy you may be able to apply for help with travel costs, including free bus travel and reduced fares on trains using a Disabled Person’s Railcard. For more information see www.direct.gov.uk and in the Search box type ‘free bus travel’ or ‘railcard’ .
Our page on driving and travel has more information.
Getting work
Jobs, epilepsy and the law
If you are employed, (either full time or part time) and have epilepsy the Equality Act 2010 protects you from being unfairly treated. The Equality Act covers you from the interview right the way through to getting the job and continues to cover you once you are working.
This means that most employers cannot refuse you a job just because you have epilepsy (see exception below). However by law they must also ensure the safety of all their employees.
To do this, an employer may need to find out more about your epilepsy and how it actually affects you. For example, whether you still have seizures, and if so, whether your seizures could present a safety risk to yourself or others at work, or if they could affect your ability to do the job.
An employer can ask you for permission to contact your doctor if they feel they need more information about your epilepsy.
What jobs can I do?
If you have the right qualifications or experience, and your seizures don't put you or the people you work with at risk then you should be able to apply for most jobs.
If you have seizures, you may not be able to do jobs that risk your safety or the safety of other people. These include: jobs that involve driving, working at heights, near open water or fire, or working with unguarded machinery.
Also, the armed services - The Army, Navy and Royal Air Force - do not have to follow the Equality Act. Because of this they can refuse to employ someone if they have a history of seizures.
If I'm applying for a job do I have to mention my epilepsy?
No you don't have to, but it can be a good idea to tell an employer about your epilepsy. As well as looking at whether your epilepsy could affect safety in the workplace, employers also need to look at whether there is anything they need to put in place because of your epilepsy that will help you to do the job.
Under the Equality Act 2010, employers are not allowed to ask you questions about your health before they offer you a job. An exception to this is that they can ask you whether you need any special requirements to help you be recruited, for example to help you attend an interview. Some people decide they will tell an employer about their epilepsy when they are offered the job. This means you have the chance to meet the employer at an interview, and talk about your skills and ability to do the job as well as explain how your epilepsy affects you if this is relevant to the job.
If I'm already working do I have to tell my colleagues?
You don't have to tell anyone at work about your epilepsy, but there are reasons why it can be helpful:
- You can tell your colleagues how you would like them to help you if you have a seizure at work.
- If you need to stop driving work colleagues may ask you why.
- If you feel something at work is making your epilepsy worse you may want to talk to colleagues about it.
- If you need to take time off work for doctors appointments.
If you develop epilepsy, or if epilepsy is making your work difficult, the Equality Act means that your employer is expected to make 'reasonable adjustments' so that you can continue to work. For example, they might be able to change your working hours to be more flexible if a seizure leaves you too tired to come in to work at your usual time. Your employer would need to know about your epilepsy to be able to make any adjustments like this.
Our page on epilepsy and employment has more information.
Feelings and stuff
Let's be honest, you probably don't want to have epilepsy. Whether you've had epilepsy for a long time or if it's something that's new, you might have questions or concerns about it. If it feels like no one understands what it's like to have epilepsy, it may be tempting to shut down and not talk about how you feel.
If your epilepsy is getting you down, talking to someone might help you. It doesn't really matter who you decide to talk to, as long as you feel you can trust them and that you think that they are good at listening. So it could be a friend, a family member or your GP.
Some people find it helpful to talk to a counsellor. Or you could call Epilepsy Society's confidential helpline on 01494 601 400 (national call rate). The lines are open Monday - Friday, 10am - 4pm.
Whoever you talk to it's OK to be unsure of what you want to say. Sometimes just having the time and space to say what you want can help to let off some steam or get your thoughts in order.
How do other young people deal with their epilepsy?
Epilepsy Society has an epilepsy forum, with one section specifically for young people. It’s free, and you don’t have to register to look at what’s on the forum. If you want to join in and post messages, you can register for free as a forum member.
Our podcasts feature Nikki and Harry, who talk about how epilepsy affects them.
See www.youthhealthtalk.org/epilepsy for video and audio clips of young people talking about their experiences of epilepsy.
Other support and information
Staying Positive - young people’s workshops
The Staying Positive workshops are free courses for young people with any health condition run by the Expert Patients Programme (EPP CIC). These cover issues like self-confidence and how you may feel about your condition.
The TeenIssues website has over 120 articles aimed at young people.
Read Pete Payne's diary, ask Dr Ann a question or find information on a range of health issues affecting teenagers on the Teenage Health Freak website.
Epilepsy Society is grateful to the young people who helped develop this guide.
© Epilepsy Society. Information updated July 2011.
