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Epilepsy
Epilepsy: What is it?
Epilepsy is a condition that affects the brain and causes seizures. Electrical activity is happening in our brains all the time, as networks of tiny brain cells send messages to each other.
These messages control all our thoughts, movements, senses, and body functions. A seizure happens when there is a sudden, intense burst of electrical activity, or misfire, in the brain. This causes the messages between cells to get mixed up. The result is an epileptic seizure. These things have lots of names like fits, seizures, funny turns, and attacks.
Do you have epilepsy?
There are more than 50,000 children with epilepsy in the UK, so you’re not alone!
Want to know more? Explore this site to learn all about epilepsy.
Epilepsy and Wellbeing
Living with a long-term health condition like epilepsy often impacts daily life including your school life, hobbies, social life, and independence. It can also impact your thoughts and feelings, how you see yourself, and how you cope with tricky or difficult situations. Below is a list of common difficulties which arise for children and young people with epilepsy. Under each heading you will find videos and weblinks to useful information, self-help strategies, and additional support.
It is important to tell someone how you are feeling so that you are not alone. You could talk to a parent/ carer, teacher, health professional (school nurse or your GP). This is particularly important if you are having thoughts or urges to harm yourself or end your life. If you are feeling unsafe or in crisis, see ‘Help I’m in Crisis’
Feelings of worry are a completely normal part of life and something that we all feel sometimes. However, too much anxiety and worry can get in the way of everyday life. Studies show that anxiety is more common in people with epilepsy compared to the general population. If you or your child or young person is struggling with anxiety, the information and strategies provided in the links below may help.
Video – Young people with epilepsy talking about experiencing anxiety
Health for Teens provide information for young people experiencing anxiety
CBeebies suggest some relaxation and mindfulness activities you can do with your child to help them cope with anxiety
The NHS website provides information for parents/carers of children experiencing anxiety
Young Minds provide information for parents/carers of children and young people experiencing anxiety
Barnardo's provides strategies for managing anxiety
Most children and young people will behave in challenging ways at some point. As they are learning to cope with big feelings, they may display a range of difficult behaviours right up to adulthood. Children and young people with epilepsy have the added difficulty of adjusting to a health condition which can impact their actions.
Seizures, medication, additional worries and being treated differently could affect you/ your child’s behaviour and children with epilepsy are at greater risk of behaviour difficulties than children without epilepsy. If your child or young person is behaving in ways that feel difficult to manage or understand, the information and strategies provided in the links below may help.
Epilepsy Action provide information about learning and behaviour difficulties in children with epilepsy
Newcastle upon Tyne Hospitals NHS Foundation Trust have some useful information for managing behaviour in a child who has a health problem
Young Minds provide information for parents/carers of children and young people experiencing challenging behaviour
The NHS website provides information for parents/ carers of young children experiencing behaviour issues
The NHS website provides information for parents/carers of teenagers experiencing behaviour issues
NSPCC have a leaflet providing advice and tips for positive parenting techniques that work well for children and teenagers
Bullying is behaviour that is intended to hurt someone else. If you are being bullied, it can make life really difficult and leave you feeling down, worried, and alone. Having epilepsy can increase your risk of being a victim of bullying due to widespread misunderstanding about the condition. All bullying is unacceptable, and you have a right to feel safe and respected. If you or your child or young person is struggling with bullying, there are things you can do to help cope and stop it happening. The links below provide information and advice for dealing with bullying.
Video: 6 things to do if you are being bulled
Young Minds provide advice for young people being bullied
Anti-Bullying Alliance provides advice for children or young person being bullied
Childline have a ‘bounce back from bullying’ quiz to give tips on coping with bullying
NSPCC provide information for parents/carers of children and young people being bullied
Kidscape provide top tips for dealing with bullying for parents/carers and for children
Kidscape also offer a bullying advice helpline for parents/carers
We all have times when we lack confidence and do not feel good about ourselves. We might have negative thoughts about ourselves, compare ourselves to others and feel that we are not good enough. Epilepsy can impact how you feel about yourself and your confidence. If negative and critical thoughts are getting in the way of you or your child’s life, the information and strategies provided in the links below may help.
Video – epilepsy and self-worth
Young Minds provide information for young people struggling with their self-esteem
Childline provides information for children and young people struggling with their self-esteem
Young Minds provide information for parents/carers of children and young people struggling with their self-esteem
BBC provide tips to build your toddler’s confidence
Mind provides tips to build confidence and self-esteem for children and young people
It is normal to feel stressed or worried about exams. You might feel pressure to do enough revision or get good grades. Sometimes stress can help us focus and get things done, but sometimes it can all feel a bit too much and leave us feeling overwhelmed. If you or your child or young person is finding it difficult to manage exam stress, the information and strategies provided in the links below may help.
Video: Exams and mental health
Childline provides advice and tips to help young people cope with exam stress
Young Minds provide advice for young people coping with exam stress
Bitesize gives 5 tips for reducing stress during exam season
The NHS provides information for parents/carers of children and young people experiencing exam stress
Bitesize gives advice on what not to say to your kids during exam season
It is normal to feel up and down in your mood. You may have days when you feel more irritable, sad, tearful, or tired. Usually with time, small changes, and support from others, these feelings pass, and you feel better after a few days or weeks. A low mood that does not go away is known as depression. These feelings can stop you from being able to enjoy your life. People with epilepsy are more likely to develop depression than others. If you are concerned that you or your child may be experiencing depression, it is important to talk someone about it and gets some help. The links below provide information and advice for coping with low mood or depression.
Video: Epilepsy and depression
Young Minds provide information for young people experiencing low mood or depression
Childline provides information for children and young people experiencing low mood or depression
Young Minds provide information for parents/carers of children and young people experiencing low mood or depression
The NHS provides information for parents/carers of children and young people experiencing low mood or depression
Anger is a normal and useful emotion that we all feel at times. It can tell us when things are not fair or right. Underneath anger, there is often a range of emotions, including fear, stress, sadness, and worry. Children and young people with epilepsy might feel a mix of emotions and they may express their feelings through anger. Sometimes it can be difficult to manage angry feelings and it can lead to unhelpful or aggressive behaviours. If you or your child or young person is struggling to control feelings of anger, the information and strategies provided in the links below may help.
Video - A young person describes what anger is like for them
Young Minds provide information for young people about managing anger
Childline suggest some calming activities you can do with your child to help them cope with stress
The NHS website provides information for parents/carers of children experiencing anger issues
Young Minds provide information for parents/carers of children and young people experiencing anger issues
The NHS website provides information for parents/carers of teenagers experiencing anger issues
Lots of people have problems with sleep, for example struggling to fall asleep, waking up during the night, experiencing nightmares or struggling to wake up. Epilepsy can also affect the brain’s normal sleep-wake cycle. Sleep problems affect your ability to concentrate, your mood and your behaviour. For advice on how to sleep better, click on the links below.
The Teen Sleep Hub provides information and advice for teens experiencing sleep problems
Childline provides information for children and young people experiencing sleep problems
The Sleep Charity provides information and advice parents/carers of children and young people experiencing sleep problems, including a free eBook
The NHS provides information parents/carers of young children experiencing sleep problems
Scope provides advice for parents/carers of children or young people with additional needs
The Sleep Charity offer national sleep helpline for young people and parents/carers
Epilepsy Specific
Young Epilepsy has a mental health wellbeing space with top tips and coping strategies from other young people with epilepsy
Young Epilepsy have partnered with Shout to offer a free 24/7 text support service to young people with epilepsy who are struggling with how they are feeling. To start a conversation, text ‘purple’ to 85258. If life is at imminent risk, call the emergency services on 999.
Young Epilepsy run virtual youth clubs. These are 40-minute online sessions, held every month, tailored for ages 10-12 and 13 plus.
Epilepsy Action offers free, confidential advice to anyone affected by epilepsy. You can call the helpline on 0808 800 5050 (open Mon-Fri 8:30am-5pm, Sat 1-4pm) or use the instant messaging service (10am-4pm Mon-Fri), or email helpline@epilepsy.org.uk.
Epilepsy Action offer virtual and face to face Talk and Support groups for anyone in the UK who is over 18 and affected by epilepsy. The groups provide a chance to hear and share stories from people with epilepsy and their loved ones. Specifically, there is a group for parents/ carers of children with epilepsy ran once a month. Face to face groups: and virtual groups.
Epilepsy Society offer a confidential helpline for anyone affected by epilepsy. You can call the helpline on 01342 831342 (open Monday and Wednesday 9am-7.30pm; Tuesday, Thursday and Friday 9am-4pm; Saturday 9am-12:30pm) or use the webchat service (no set hours), or email helpline@epilepsysociety.org.uk.
General Support
You can download Shout’s Little book of coping skills. This booklet has plenty of tips and techniques you can try if you are feeling anxious, stressed, or low.
Young Minds offer a free parents' helpline to parents and carers who are concerned about their child or young person’s mental health:
Samaritans offer listening and support to people in times of need. They can be contacted by anyone, no matter how old you are. Whatever you are going through, you can call any time, from any phone for FREE.
Childline is a free helpline that provides support to children and young people. If you are under 19 you can confidentially call, chat online or email about any problem big or small.
PAPYRUS offers a suicide prevention helpline to children and young people under the age of 35 experiencing suicidal thoughts, or for anyone concerned that a young person could be thinking about suicide
The Campaign Against Living Miserably (CALM) is leading a movement against suicide. CALM runs a free and confidential helpline and webchat 5pm until midnight every day for anyone who needs to talk about life’s problems.
What happens when you have a seizure?
How a seizure affects someone depends on what area of the brain is involved. A person might lose consciousness or might stay aware of what’s happening around them. They might have strange sensations, or movements they can’t control, or they might go stiff, fall to the floor and shake. Other things that might happen are shaking, jerking, drooling, losing focus, and vomiting. Some people may also wet themselves. Some people may get a warning before a seizure called an aura. Some people may feel confused or tired after the seizure.
Anyone can have a one off seizure, but it doesn’t always mean they have epilepsy. People are usually only diagnosed with epilepsy by a doctor if they have more than one seizure.
When does epilepsy start?
Epilepsy can start at any age and there are many different types.
Children can grow out of some types of epilepsy. For many people, epilepsy is a life long condition.
Living with epilepsy and how it makes you feel
Epilepsy can be frightening, and it can feel lonely. Sometimes other people don't understand what it's like to live with epilepsy. Most people with epilepsy lead full, active lives, attend school, participate in sports, and have no other medical problems. Many young people with epilepsy can fully control their seizures with medication. Some may grow out of their epilepsy.
Young people living with epilepsy say how important it is for them to understand their condition. Making connections with other young people and hearing their experiences can really help.
Further information
Epilepsy Action has information about epilepsy and living with epilepsy.
Young Epilepsy supports children and young people with information and advice about living with epilepsy.
Royal College of Paediatric and Child Health information following a first seizure without fever for parents and young people.
The Channel is an online space by Young Epilepsy for young people living with epilepsy, including a mental health and wellbeing space and a chance to become a young rep.
