About epilepsy - information for young people Contents All things medical First seizure Just diagnosed Getting seizure control Doing things Social life Activities School, college, university and work Education Making choices about further study and a career Where we re different For the girls For the boys 1
First seizure Feelings Talking to your GP How do doctors diagnose epilepsy? Feelings One in 20 people has a single seizure in their lives, but epilepsy is a tendency to have seizures. So you probably wouldn t be told you have epilepsy unless you have more than one seizure. When someone first says they think you have had a seizure, you might feel lots of different things. It s not an easy time. You might think it can t be true. You might be quite anxious, not knowing what has happened. And your parents might be quite anxious too. The sooner you see your doctor, the sooner you start getting answers to your questions. Talking to your doctor When you ve had something that might be a seizure you ll need to talk about this with the hospital doctor or your GP. They will ask lots of questions about your seizure. They ll want to know anything you can tell them about how you felt before and after it. It will also be really useful for them to talk to someone who saw you have the seizure. This is because you probably won t remember much about what happened. How do doctors diagnose epilepsy? The doctor will want to know all about what happened to you. They ll need to check whether there was anything other than epilepsy which may explain what happened to you. When they have done that they will refer you to the right specialist. If you are under 16 this will probably be a paediatrician with training and expertise in epilepsy. If you re 16 or over this will usually be a neurologist with training and expertise in epilepsy. They will probably want you to have a test called an electroencephalogram (EEG) and sometimes they will also ask for test called a magnetic resonance imaging (MRI). The EEG involves sticking electrodes on your head. These monitor the electrical activity coming from your brain. It doesn t hurt at all. And it only takes about 15 to 30 minutes. Epilepsy Action has a video clip of someone having an EEG The MRI is a scan of your brain, where you lay on a table and slide into a machine, a bit like a tunnel. The machine takes pictures of your brain and shows if there are any lumps and bumps which may help to explain why you re having seizures. It doesn t hurt at all, though it can be quite noisy. Epilepsy Action has a video clip of someone having an MRI 2
The paediatrician or consultant will then put the results of all this information together to make a decision about whether you have epilepsy. If they decide you do, they will usually suggest you take anti-epileptic drugs (AEDs). Epilepsy Action has more information on getting the right care and treatment Just diagnosed What is epilepsy? What are seizures? What causes epilepsy? What happens during a seizure? Will I have epilepsy for life? What is epilepsy? Epilepsy is defined as a tendency to have epileptic seizures. Usually you won t be diagnosed with epilepsy unless you have had more than one seizure. There are loads of things you might feel when you have been told you have epilepsy. Here are some of them: Shock Relief Anger Worry Denial However it feels for you, it will probably take some time for you to get your head round it. You are likely to have lots of questions. Having some facts to hand, about epilepsy will hopefully help you start coming to terms with your diagnosis. You may feel like you are the only person in the world this is happening to. Not so. In the UK about 51,000 people under 17 have epilepsy. What are seizures? Our brains operate rather like computers. They control everything we do. Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden and intense burst of this electrical activity. This interrupts the way the brain normally works and the brain s messages become mixed up. It doesn t hurt, but it causes our body to feel different or do strange things that we can t control. What causes epilepsy? Here are some reasons why some people might have epilepsy: A brain injury or infection around the time you were born A brain tumour A major bang to your head A type of epilepsy that runs in families 3
Some damage to your brain which has always been inside your head which is causing you to have seizures For most people there s no explanation why you have epilepsy. What happens during a seizure? Epilepsy is either generalised or focal. Generalised means both halves or hemispheres of the brain are affected by the epileptic activity. Focal means the epileptic activity starts in one particular place in the brain. It can then spread to affect both halves of the brain and become generalised. There are loads of different types of seizures. Which type(s) you have sometimes depends on where the epileptic activity starts in your brain. Here are some of the more common seizure types. Tonic-clonic seizures This is a type of generalised seizure. This means that the epileptic activity is happening in both halves of your brain. In a tonic-clonic seizure your body stiffens, all the air is forced out of your lungs, you fall to the ground and shake. Sometimes people will wet themselves. Most people have no idea it s going to happen. After the seizure has stopped you ll still feel quite groggy for a while. It usually takes a few hours to recover fully. People often want to have a long sleep after a tonic-clonic seizure. Absence seizures Absence seizures are also generalised, so they also affect both halves of your brain. They usually only last for a few seconds. Absences can look just like day dreaming, except that you can t snap out of them. Sometimes people don t notice you are having absences for quite a while. It s possible to have up to a hundred of them through the day. If this has been happening to you, you might have felt like it was really difficult to make sense of things happening around you. This will be because you were missing out on a lot of information. Myoclonic seizures These are muscle jerks. They can affect your whole body, or just one part of it. They generally only last for a few seconds. It doesn t sound like much, but they can be dangerous if you are holding a hot drink or something sharp, for example. Focal seizures In focal seizures the epileptic activity starts in one part of your brain. What happens to you depends on where the activity starts in your brain and how far it spreads. For some people it can just be a funny sensation for a minute or two, but your consciousness isn t affected. Sometimes this can act as a warning that you are about to have a bigger seizure. 4
Other people can have a changed level of consciousness. This means that they can still do stuff, but they don t really know what they re doing. They probably won t feel connected to anyone or anything around them. Here are some of the things you might feel or do during a focal seizure: Jerk or twitch Have pins and needles Have a feeling of heat or sickness that rises up your body Have a strange taste or smell Have a feeling of deja vu (like you ve been somewhere before) Smack your lips Fiddle with things Wander around Sometimes people start with a focal seizure, then the epileptic activity spreads and they have a tonic-clonic seizure. This is sometimes called a secondary generalised epilepsy. Epilepsy Action has more information about seizure types Will I have epilepsy for life? Some people have a kind of epilepsy which means they have to take anti-epileptic drugs (AEDs) for the rest of their life. Other people have a type of epilepsy that they might grow out of. If this is you, your doctor or specialist nurse may suggest gradually taking smaller doses of your AEDs in a controlled way. Getting seizure control 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? 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 that you take antiepileptic 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 5
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. Contact Epilepsy Action about our seizure diary and seizure app 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. Epilepsy Action has more information 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 Stress Alcohol 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. 6
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 Epilepsy Action has more information 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. Epilepsy Action has more information about epilepsy and wellbeing 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. 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. 7
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. Epilepsy Action has more information 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! First aid Epilepsy Action has more information about seizure types First aid for tonic-clonic seizures Do... Protect the person from injury. Remove harmful objects from nearby Cushion their head Look for an epilepsy identity card or identity jewellery Help breathing by gently placing them in the recovery position once the seizure has finished Stay with the person until they have fully recovered Be calmly reassuring Don't... Restrain the person s movements Put anything in their mouth Try to move them unless they are in danger Give them anything to eat or drink until they are fully recovered Attempt to bring them round If you want to watch a video clip of someone being put in the recovery position, or look at pictures of how it happens, go to the first aid pages on our main website. Call for an ambulance if... You know it is the person s first seizure, or 8
The seizure continues for more than five minutes, or One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or The person is injured during the seizure, or You think the person needs urgent medical attention First aid for focal (partial) seizures Do... Guide the person from danger Stay with the person until recovery is complete Be calmly reassuring Explain anything that they may have missed Don't... Restrain the person Act in a way that could frighten them, such as making abrupt movements or shouting at them Assume the person is aware of what is happening, or what has happened Give the person anything to eat or drink until they are fully recovered Attempt to bring them round Call for an ambulance if... You know it is the person's first seizure The seizure continues for more than five minutes The person is injured during the seizure You believe the person needs urgent medical attention 9
Social life Telling people about your epilepsy Other people s attitudes Your parents Brothers and sisters Telling people about your epilepsy One thing you might feel when you are told you have epilepsy, is that epilepsy somehow makes you different from other people. And you might be worried that people will treat you differently. This is one of the things young people have said to us. If you can take having epilepsy in your stride, and don t feel it s too big a deal, then it s much more likely that your friends will see it the same way. They may be a bit scared at first, especially if they don t know anything about epilepsy and if they have seen you have a seizure. But once they get some information about epilepsy (like from this site) then hopefully they will feel much more relaxed about it. And if they know what to do if you have a seizure, then it may give you and your family some reassurance when you re out and about. Whether you re at school, college, university or work, it s a good idea to let someone know about your epilepsy, unless you have seizure control. Most people would see seizure control as not having had a seizure for about 12 months. If your epilepsy is well controlled and you haven t had a seizure for 12 months or more, your doctor might say you re in remission. Sometimes people with epilepsy feel they no longer need to tell people about their epilepsy. But seizures can still happen, for example if you re ill or you ve forgotten to take your AEDs. So some people choose to tell people they spend time with about their epilepsy, and what to do to help if they have a seizure. When you let them know you have epilepsy, your teacher, tutor or manager can be prepared, in case you do have a seizure. And they can think about anything they might need to do to make sure you and the people around you stay safe. Other people s attitudes Sometimes other people might seem to treat you differently. And it may feel like this is because of your epilepsy. It might be, but it might not be. It s important to remember that there could be other reasons for someone s behaviour. You could try checking with the person you think is treating you differently. They might be able to explain what they re feeling. Sometimes someone can treat you differently through ignorance. It s normal to feel scared of something you don t understand. If you feel able to, you could just try and answer their questions and deal with their fears yourself. If it doesn t feel okay to do this, you could point them to this website. 10
If it s at school or college where this is happening, you could ask if it s possible to arrange for someone to do epilepsy awareness training. It s important that you feel okay about having this happen. Epilepsy Action has more information about epilepsy awareness training There are over 600,000 people in the UK with epilepsy. So getting a group of people, like your class or year group a bit more aware of it will be a great thing. It should help you because people will understand more about epilepsy. It will help other people with epilepsy. And the more people there are who understand about epilepsy, the better the world will be. You and the people you live with Talking to the people you live with can help you and them realise what information you all still need. The better informed you all are, the clearer you can all be about what you can and can t do. If you re worried about having epilepsy, hopefully this information can help you to feel easier about it. And it should also give you some ideas about what to do to help yourself feel a little easier. It may be that you re fairly relaxed but that your parents are worried about you having epilepsy. Helping them to feel less worried is definitely in your interest. Once they are more relaxed it will be easier for you to be more independent. Here are some things you could do that might help your parents feel less worried. Always carry an epilepsy awareness card around with you Put an alarm on your phone to remind you to take your tablets Download our seizure diary or app and record useful information in it Reassure your parents that you understand the risks of alcohol, drugs and late nights Get your friends to reassure your parents that they know what to do if you have a seizure Agree to check in with them every so often by phone, especially when you first start going out again Talk with them about maybe having a bed alarm in case you have a seizure in the night. You can switch this on when you re ready to settle down for the night. An alarm may help your parents to worry less and sleep more. And someone who has had proper sleep is much easier to negotiate with! Epilepsy Action has more information about epilepsy awareness cards, our seizure diary app and bed alarms Brothers and sisters Brothers and sisters are also likely to be worried about you and might not know what to do. Show them this information. It could help them. Make sure that any other family members you spend a lot of time with have epilepsy information too. Epilepsy Action has more information about brothers and sisters of people with epilepsy 11
Activities Will there be things I can t do? Risk assessments Discrimination and the Equality Act Sport (see the information on our main website) Alcohol and recreational drugs Photosensitive epilepsy Transport and travel Will there be things I can t do? Yes there will be some things you can t do, at least until your seizures are well controlled. For example, you ll need to be careful with water, heights and sharp or some electrical equipment. Until you have seizure control, here are some things you could consider to keep yourself as safe as possible: Tell a life guard about your epilepsy if you want to swim Take a friend if you want to go for a walk near open water Cycle on quieter cycle paths rather than busy roads. And always wear a helmet Use the cooker/ iron/ heated hair tools when there is someone else in the room There are some things you may always need to be careful about. This would include having a bath in the house alone. As seizures are often unpredictable, it s often safer to shower if you re in the house alone. And even then make sure not to lock the door. Risk assessments If you want to take part in an activity that might carry some risk for you, you need a risk assessment. Contact the organisation to get the risk assessment done before turning up for the activity. Then you can be clear about what your choices are. And the organisation can get things in place if necessary, to make things safer for you. Here are some useful questions to help work out if there is a risk for you. What type(s) of seizure do you have? What sorts of things can trigger your seizures? How often do you have seizures? How long do your seizures usually last? What usually happens when you have a seizure? How long does it usually take you to recover from a seizure? What time of day do you usually have seizures? Do you get a warning (also known as an aura ) before you have a seizure? Are there any areas of the activity that could be dangerous, if you had a seizure? 12
Is there any part of the activity that you are concerned about? These questions are also relevant for work. Follow the link for full information about work. Epilepsy Action has more information about work Discrimination and the Equality Act It is important the assessment is about you and not someone s general understanding of epilepsy. If there is a risk, then you and whoever is providing the activity, need to see if there is a reasonable adjustment that can be made so that the activity will be safe for you. It s a requirement under the Equality Act for the person providing the activity to do a risk assessment. But the law only says they have to consider adjustments rather than actually carry them out. If you think the organiser is treating you unfairly, for example not looking at possible reasonable adjustments, then you might want to look at our information on disability discrimination. Epilepsy Action has more information about epilepsy and disability discrimination Alcohol and recreational drugs Looking after yourself is not an easy task as a teenager. There is all sorts of peer pressure to do things that could be harmful for you. In the end it s up to you what you do. But it s important for you to have the facts so that your choices are based on sound information. Alcohol Having epilepsy and taking anti-epileptic drugs (AEDs) doesn t have to mean that you can t drink alcohol. But there are good reasons why you might choose to limit how much alcohol you drink. You might even choose not to drink alcohol at all. Alcohol can make the side-effects of some AEDs worse. If your AEDs already make you feel sleepy, dizzy or light-headed, alcohol can make this worse. Taking AEDs can also make you get drunk much quicker than your friends, even though you drink the same amount. This can leave you feeling out of control. You might slur your words, lose your balance and vomit. Drinking a lot, or binge drinking, can cause you to have withdrawal seizures. These seizures may start between 7-72 hours after you ve stopping drinking. Drinking alcohol can mean you forget to do things like taking your AEDs. It can also lead to missing meals and not getting a good night s sleep. All of these things will mean you re far more likely to have a seizure. Most people with epilepsy can have a couple of drinks without it triggering a seizure. But everyone is different, and some people find even a small amount of alcohol is a problem. Recreational drugs Almost everything we have said about alcohol is also true for drugs. Be aware of the risk of missing a dose of your AEDs, of missing meals and of not getting enough sleep. 13
You re never going to know exactly what all the ingredients are in a recreational drug. So this also increases the risk of you having seizures if you take them. Photosensitive epilepsy Flashing images that can trigger seizures You might have been diagnosed with photosensitive epilepsy. This means that if you see images that flash or flicker at a certain frequency, you are more likely to have a seizure. Some patterns can also trigger these seizures. The seizures will happen at the time or very soon after the trigger. Around three in every 100 people with epilepsy have photosensitive epilepsy. It usually begins before the age of 20, most commonly between the ages of seven and 19. Photosensitive epilepsy affects more girls than boys. Reducing the risk With photosensitive epilepsy you ll need to be careful about a few more things. For example strobe lights, like you may find in a disco or night club, are best avoided. For people who don t have photosensitive epilepsy, cinema screens, televisions and computers are not a problem in themselves. But flashing images on them could be (for example Xbox games and some Youtube images). If you look at something that might trigger a seizure, don t close your eyes. This could increase your risk of having a seizure. Instead, immediately cover one eye with the palm of your hand and turn away from the trigger. This reduces the number of brain cells that are stimulated and reduces the risk of you having a seizure. General safety suggestions for watching television or using a computer Make sure that the room is well lit Have a lamp lit close to the screen Consider covering one eye with something that won t let light through, such as an eye patch. This will reduce the number of brain cells that are stimulated by any flashing or flickering. For most people with photosensitive epilepsy, this will make it less likely that they ll have a seizure If you have any discomfort, such as dizziness, blurred vision, loss of awareness or muscle twitching, stop looking at the screen immediately If you re using the computer, take frequent breaks for rest and food Epilepsy Action has more information about photosensitive epilepsy Transport and travel Driving Most people with epilepsy need to have been seizure-free for 12 months to be able to apply for your provisional or full driving licence. But it does depend on what type of seizures you have and when you have them. 14
Epilepsy Action has more information about epilepsy and driving Bus and train benefits If you re 17 or over and can t apply for a driving licence because of your epilepsy you re entitled to certain benefits. These are a free bus pass and a Disabled Person s Railcard. Bear in mind that you have to be taking anti-epileptic drugs to get a Disabled Person s Railcard. Epilepsy Action has more information about benefits in the UK, including free prescriptions Bikes It s best for everyone who rides a bike to wear a helmet. If you have epilepsy that s even more important. If you haven t got seizure control, then it s safest not to cycle on busy roads or beside rivers or canals. School, college, university and work If I have epilepsy will I still be able to learn? Will I be able to get support with my learning? School exams Making choices about further study and a career If I have epilepsy will I still be able to learn? There are a few things that might make it more difficult to learn if you have epilepsy. Some of them are: The condition itself The cause of the epilepsy The effects of seizures Side-effects from epilepsy medicines Absences from school Here are some examples of how these things could affect your learning: Your epilepsy might be caused by damage to your brain. The damage may make it difficult for you to learn How often you have seizures and how serious they are may affect how well your brain works. In particular, frequent or severe seizures could affect your memory If your seizures mean that you re not getting proper sleep, that lack of sleep can affect your memory and ability to think You may find the side-effects of your AEDs make you feel drowsy or dizzy. This will also make it more difficult for you to learn Being absent from school because of your seizures can mean that you miss out on learning Here are some problems with learning you might have: 15
Remembering information Keeping up with the speed the teacher and other pupils are going at Being able to concentrate Will I be able to get support with my learning? If you feel like you re struggling with your learning or memory, it would be good to you talk to your teacher or head of year, or whichever adult in school you feel okay with, about this. And of course your parents too. The school may talk with you and possibly your parents. They may want to talk about additional support you might need. And they may write an individual healthcare plan for you. This could help the teachers understand your situation better. If things are especially difficult for you to take in, the school may consider extra learning support for you. This might include help from a teaching assistant. Epilepsy Action has more information about the individual healthcare plan Edwards Every year Epilepsy Action awards Edwards to nurseries, schools and colleges. The awards go to organisations who are doing great things to support children and students with epilepsy throughout their education. Our Edwards will show you how well some schools have been able to support young people with epilepsy. You may want to tell your school about the Edwards, to give them some ideas of what else they could do. They may be interested in getting some epilepsy awareness training from Epilepsy Action. Epilepsy Action has more information about: Our Edwards and Epilepsy awareness training What to do if you are not happy with your care at school School exams School exams can be really stressful. And stress can make having a seizure more likely. So make sure you look after yourself as well as you can during this time. Find ways to relax, get regular meals and regular sleep. All this will reduce your risk of having a seizure. Epilepsy Action has more information about epilepsy and wellbeing If you re taking GCSEs you may be able to get some extra help at exams time. Make sure you ask about this a long time before the exams happen. The best time is right at the beginning of the school year. Epilepsy Action has more information about support with exams 16
Making choices about further study and a career There are loads of things to think about when you re considering further or higher education. Before you decide what you want to do when you leave school, it will be useful for you to have some information about work and epilepsy. As a person with epilepsy, you are covered by the equality laws. This can be helpful when applying for jobs. There are two situations it would be useful for you to know about first. The Armed Forces is the only organisation which is outside the Equality Act. This means they have very strict rules about who can be accepted for a job. LINK Epilepsy Action has more information about the Armed Forces The epilepsy and driving laws for larger vehicles like lorries, buses, coaches and sometimes taxis, are much stricter than for an ordinary car. Epilepsy Action has more information about group 2 licences. So you need to know about those before considering the choice of long distance lorry driver for instance. Apart from these situations, the main thing to affect your choices will be how good your seizure control is. If you haven t had a seizure for 12 months you could apply for a driving licence. This is a good measure of whether you would be safe to do other things like look after children, work alone, operate machinery. If you re still having seizures you will need a risk assessment to see whether the employer will need to consider any reasonable adjustments for you. This might feel like a lot to think about, but it s worth having a clear picture at this point, rather than getting your hopes up and then finding out you aren t able to do it. If you re not sure what your options might be, why not contact the Epilepsy Helpline freephone 0808 800 5050, or one of our other methods. Epilepsy Action has more information about epilepsy and work and our support services 17
For the girls There are some particular things you ll need to know about if you re a female with epilepsy. The list includes: Puberty Periods Your sex life Contraception Your condition, anti-epileptic drugs and pregnancy Puberty Puberty is when your body starts to change from a child to an adult. You begin to produce sex hormones and these make your body change. For example, you start to grow more body hair, your breasts grow and you start having periods. You might also feel more emotional and have mood swings. Most girls begin puberty around the age of 12, but some start earlier and some later. Everyone grows and changes at different rates. Can my epilepsy affect puberty? Having epilepsy doesn t usually affect puberty. But if you have delayed puberty (starting after the age of 14), this may be because of your epilepsy. Having lots of seizures during childhood or taking anti-epileptic drugs (AEDs) can sometimes make your body start producing sex hormones later than in some other girls. If you haven t shown any signs of starting puberty by the time you re 14, talk to your doctor or specialist nurse. They ll try and find out the possible reasons for this. Can puberty cause epilepsy? Puberty doesn t cause epilepsy. But some girls find that changes in their hormones can trigger seizures. Some types of epilepsy syndromes usually begin during your teenage years. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. Epilepsy syndromes that may begin during teenage years include juvenile myoclonic epilepsy and juvenile absence epilepsy. Epilepsy Action has more information about juvenile absence epilepsy and juvenile myoclonic epilepsy Can puberty affect my epilepsy? The changes in your hormone levels during puberty might cause you to have more seizures. And you might feel more stressed and anxious. There could be a few different reasons for this. Your hormone changes can affect how you feel. Having more seizures than usual can be stressful and can make you feel anxious. And just being a teenager can be pretty stressful! Periods General information about periods When you go through puberty, you start having periods (also known as the time of the month). This is when you bleed from your vagina for a few days, usually each month. The 18
time between the start of one period and the start of the next is called the menstrual cycle. Most girls have a menstrual cycle that is between 24 and 35 days. The average is 28 days. Periods and epilepsy If you have epilepsy, your periods might happen more often than every 24 days or less often than every 35 days. Most girls have regular periods. This means that the number of days between the start of one period and the start of the next is the same each time. If you miss a period, this is sometimes a sign that you re pregnant. However, there are lots of other reasons why you might not have a period or why your period is late. Some girls don t have regular periods. The number of days between the start of each period can be different each time. Some girls may even go for several months without having a period, even though they aren t pregnant. If you have epilepsy, you have a slightly higher risk of having irregular periods then other girls, especially if you have frequent seizures. Irregular periods may be caused by epilepsy itself, or your seizure pattern or even anti-epileptic drugs. It s not unusual for periods to be irregular when you start having them. It can take up to two years for your body to settle into a regular pattern. If you are still having irregular periods after two years, it would be a good idea to talk to your doctor. They ll look into all the possible reasons for this. Polycystic ovary syndrome For some girls, irregular periods are caused by a medical condition called polycystic ovary syndrome (PCOS). Girls with PCOS have lots of tiny cysts on their ovaries and unusual hormone levels. This can cause symptoms like weight gain, spots and more hair than usual on your face and body. If you have temporal lobe epilepsy, there s slightly more chance that you ll develop polycystic ovary syndrome (PCOS) than other girls. Epilepsy Action has more information about temporal lobe epilepsy There may be more chance of developing PCOS if you take the anti-epileptic (AED) drug sodium valproate, especially if you ve taken it since you were young. If sodium valproate may be part of the cause of the PCOS, it goes away when you stop taking that drug. Sodium valproate can also be called Epilim or Epilim Chrono. It is important that you don t suddenly stop taking your AEDs, as your seizures might return or get worse. You should talk to your doctor, who can help look at other possible AEDs. Information about sodium valproate The Medicines and Healthcare Products Regulation Agency (MHRA) have published some more detailed information about sodium valproate. If you are taking sodium valproate, or your doctor is considering prescribing sodium valproate for you the MHRA advise you to read this booklet along with the patient information leaflet. This is because they are advising that, if you are a woman capable of becoming pregnant your doctor should only prescribe sodium valproate if nothing else works for you. It s worth talking to your doctor if you notice any of the following: Your periods are often less than 21 days apart 19
Your periods are often longer than 35 days apart Your periods last longer than seven days Your doctor can look into the possible causes and suggest treatments that may help you to have more regular periods. If you do have polycystic ovary syndrome (PCOS), your doctor may advise you to change your AEDs. Or they may suggest you take the combined oral contraceptive pill, which may help to protect against PCOS. Seizures and your menstrual cycle You may notice that you have more seizures than usual at certain times of the month. This could be at the start of your period, around the middle of your menstrual cycle, or in the week before your period. These seizures could be caused by the changing levels of hormones in your body. If you think there s a link between your seizures and menstrual cycle, it s a good idea to keep a seizure diary for three months. This will help you and your doctor to see if there is a pattern. Your doctor may then be able to discuss possible treatments with you. Epilepsy Action has more information about keeping a seizure diary Premenstrual tension (PMT) It s not unusual to feel moody, bad tempered, bloated, stressed and anxious in the days leading up to your period. This is known as premenstrual tension (PMT). Some people with epilepsy find that feeling stressed or anxious makes them more likely to have seizures. So you might notice that you have more seizures if you have PMT. Talk to your GP if your PMT is causing you problems. Epilepsy Action has more information about epilepsy and periods Sexual relationships There s lots of pressure these days around girls and sex. It s really important to know that if and when you want to have sex, this should be completely your choice. It should not be something you do because someone else thinks it s a good idea. This is of course true whether you have epilepsy or not. It s not unusual to worry that your epilepsy might affect your sexual relationships. But sex is not a problem for many people with epilepsy. Seizures during sex Some people with epilepsy do worry that they ll have a seizure during sex. The fact is, you re no more likely to have a seizure during sex than at any other time. It s important that you don t feel stressed, worried or pressurised into having sex. Stress and worry might make you more likely to have a seizure. Sexual problems Most people have problems with their sex life from time to time. This might include having no interest in having sex. Common reasons for the lack of interest can be stress, tiredness, illness and alcohol. If you have epilepsy and feel like you re having sexual problems, there could be some other reasons why. Here are some examples: 20
Your own feelings about your epilepsy might make you lose interest in sex You may be taking certain anti-epileptic drugs which can result in some women having less interest in sex Your seizures might affect the way your body releases sex hormones If you have any worries about your sex life, you re not alone. It s really worth talking to your doctor about your worries. They ll look for ways to help you. Contraception If you re having sex and don t want to get pregnant, you need to find contraception that works well for you. If you do want to get pregnant, it s important to make sure that your pregnancy is well-planned. If you take AEDs, some types of contraception won t work as well for you as for other women. For example some AEDs reduce how well the Pill works, which could lead to an unexpected pregnancy. And some contraception can make AEDs work less well. This could lead to you having more seizures. Remember that all the advice you hear about safe sex and sexually transmitted infections applies to you as well as anyone else. It is good advice always to use a condom. Epilepsy Action has more information about epilepsy and contraception Anti-epilepsy drugs and pregnancy If you have epilepsy, a doctor s advice is to avoid pregnancy until you ve had pre-conception counselling. This is because having seizures during pregnancy, and also taking some AEDs such as sodium valproate, can cause possible risks for an unborn baby. If your pregnancy is planned, these risks can be reduced. So if you are still a teenager and think you may want to have children at some point in the future, it would be good to talk to your epilepsy nurse or neurologist. You could decide together whether you re on the best AEDs for this. You ll want ones which give you the best seizure control balanced against the fewest risks to an unborn baby. If you do find you re pregnant, try not to panic! And whatever you do, make sure to keep taking your AEDs at least until you ve been able to talk to a health practitioner about this. This could be your GP, but would ideally be your epilepsy nurse or neurologist. If you suddenly stop taking them, you will be at a high risk of having a seizure. This in itself could be a risk to you and the baby. Emergency contraception or the morning after pill Emergency contraception can be used after unprotected sex or when your planned contraceptive has failed, to prevent pregnancy. Before you use one of these, check whether they go with your epilepsy medicine. Epilepsy Action has more information about epilepsy and pregnancy 21
For the boys There are some particular things you need to know if you re a male with epilepsy. Puberty your sex life Puberty Puberty is when your body starts to change from a child to an adult. You begin to produce sex hormones, which make your body change. For example, your voice gets deeper, you start to grow hair on your face and other parts of your body and your penis and balls grow. You might also feel stronger emotions and have mood swings. Most boys begin puberty between the ages of 10 and 15, but some start earlier and some later everyone grows and changes at different rates. Can puberty cause epilepsy? Puberty itself doesn t cause epilepsy. However, some types of epilepsy syndromes usually begin during your teenage years. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. Epilepsy syndromes that may begin during teenage years include juvenile myoclonic epilepsy and juvenile absence epilepsy. Epilepsy Action has more information about juvenile absence epilepsy and juvenile myoclonic epilepsy Sexual relationships There s lots of pressure these days around having sex. It s really important to know that if and when you want to have sex, this should be completely your choice. It should not be something you do because someone else thinks it s a good idea. This is of course true whether you have epilepsy or not. It s not unusual to worry that your epilepsy might affect your sexual relationships. But sex is not a problem for many people with epilepsy. Seizures during sex Some people with epilepsy do worry that they ll have a seizure during sex. The fact is, you re no more likely to have a seizure during sex than at any other time. It s important that you don t feel stressed, worried or pressurised into having sex. Stress and worry might make you more likely to have a seizure. Sexual problems Most people have problems with their sex life from time to time. Problems can include having little interest in sex or finding it difficult to get and keep an erection. Common causes of sexual problems for men include stress, tiredness, illness and alcohol. If you have epilepsy and are having problems with your sex life, there could be some other reasons too. Here are some examples: 22
Your own feelings about your epilepsy might make you lose interest in sex You may be taking certain anti-epileptic drugs (AEDs) which can cause some men to have less interest in sex You might have lower levels of the sex hormone testosterone than other men. This could be due to epilepsy itself or some AEDs Epilepsy Action has more information about sex, men and epilepsy About this information This information is written by Epilepsy Action s advice and information team, with guidance and input from people living with epilepsy and medical experts. If you would like to know where our information is from, or there is anything you would like to say about the information, please contact us at epilepsy.org.uk/feedback Epilepsy Action makes every effort to ensure the accuracy of information but cannot be held liable for any actions taken based on this information. Our thanks Epilepsy Action would like to thank epilepsy specialist nurses Roz Atkinson, Janine Winterbottom and Carmel McGinn of Cardiff, Liverpool and County Fermanagh for their valuable contributions to this information. Date: December 2014 Due for review: December 2017 Code: F118.02 Your support We hope you have found this information helpful. As a charity, we rely on donations to provide our advice and information. If you would like to make a donation, here are some ways you can do this. Visit www.epilepsy.org.uk/donate Text ACT NOW to 70700 (This will cost you 5 plus your usual cost of sending a text. Epilepsy Action will receive 5.) Send a cheque payable to Epilepsy Action to the address below. Did you know you can also become a member of Epilepsy Action from as little as 1 a month? To find out more, visit epilepsy.org.uk/join or call 0113 210 8800. Epilepsy Helpline Freephone 0808 800 5050, text 0753 741 0044, email helpline@epilepsy.org.uk, tweet @epilepsyadvice Contact details Epilepsy Action, Gate Way Drive, Yeadon, Leeds LS19 7XY, UK, +44 (0)113 210 8800. A registered charity (No. 234343) and company limited by guarantee (No. 797997) in England. Copyright Epilepsy Action 23
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