If you’ve had a seizure and are waiting for tests, appointments or answers, you might be wondering what you can still do, how to stay safe and what happens next. We spoke to Sharon Turner, Roald Dahl Epilepsy Nurse Specialist, about some of the questions young people and their families often have while they wait.
Having a seizure can leave you with lots of questions. Why did it happen? Will it happen again? Can I still go to school, see friends or do the things I normally do?
You might not have all the answers straight away. Having a seizure does not necessarily mean you have epilepsy, and your healthcare team may need to find out more about what happened.
While you’re waiting, there are things that can help you and the people around you feel more prepared.
We spoke to an epilepsy specialist nurse about the advice she gives to children, young people and their families during this time.
Know what to do if another seizure happens
One of the most important things is making sure you and the people around you know what to do if another seizure happens.
Parents and carers should know basic seizure first aid, when to seek emergency help and who to contact if they're worried.
Knowing there is a plan in place can also help you feel more reassured.
Keep a record of what happened
Your healthcare team will want to understand as much as possible about what happened before, during and after your seizure.
It can help to make a note of:
- what you were doing before the seizure
- whether the whole body or just one side was affected
- how long it lasted
- how you felt afterwards
- whether you remembered what had happened
- whether you had a warning or strange feeling beforehand.
Don't worry if you can't remember everything yourself. Someone who was with you may be able to help.
A video can help your healthcare team
If another seizure or unusual episode happens, a video can sometimes give healthcare professionals useful information about what is happening.
If someone is able to record safely, Sharon recommends making sure there is enough light and, where possible, that your face and the movements of your body can be seen.
Your safety and dignity should always come first. You should be appropriately clothed or covered, and nobody should delay giving you first aid or getting help in order to take a video.
You can still do everyday things
After a seizure, it's understandable for you and your family to feel nervous about carrying on as normal.
But having had a seizure doesn't necessarily mean you need to stop going to school or nursery, playing sport, seeing friends or taking part in your usual activities.
Some activities may need more thought or supervision, particularly around open water, swimming, cooking, roads or climbing.
The important thing is to think about how risks can be reduced rather than assuming everything has to stop.
If you or your family aren't sure whether an activity is safe for you, speak to your healthcare team.
What about seeing friends and having sleepovers?
Having a seizure doesn't mean your social life has to stop either.
If you're visiting a friend or having a sleepover, your parent or carer may want to speak to the responsible adult first. They can explain what to do if you have another seizure, share first aid information and make sure they have the right contact details.
This can help everyone feel more confident while allowing you to continue spending time with your friends.
It's okay to say: "We don't know yet"
Waiting for answers can be difficult, particularly if you're worried that another seizure might happen.
Sharon's advice to parents and carers is to be honest. They might not know why you had a seizure yet, but they can reassure you that they know what to do if another one happens and will help to keep you safe.
If you're feeling worried, tell someone. You don't need to keep your questions or concerns to yourself.
Look after yourself while you wait
Getting enough sleep and having a good bedtime routine are important.
Sharon also advises taking regular breaks when gaming and being in a well-lit room when you're using screens.
Most importantly, don't let worries about another seizure take over. Talk to a parent, carer, healthcare professional or another adult you trust about how you're feeling.
Be careful where you look for answers
It can be tempting to search online for answers, particularly when you're waiting for an appointment or diagnosis.
But there is lots of information about seizures and epilepsy online, and not all of it is reliable.
Stick to information from trusted health organisations and the advice your healthcare team has given you. If something you've read online worries or confuses you, ask your healthcare team about it rather than trying to make sense of it alone.
You don't have to cope with the wait alone
You might not know yet why your seizure happened or what happens next. That's okay.
While you're waiting for answers, focus on what you do know: there are people around you who can help keep you safe, you can ask questions when you're worried, and a seizure doesn't have to mean putting everyday life on hold.
Take things one step at a time.
