Epilepsy is a common condition that affects the brain and
causes frequent seizures. Usually they won’t be diagnosed
with epilepsy unless they have had more than one seizure.
Seizures are bursts of electrical activity in the brain that
temporarily affect how it works. They can cause a wide
range of symptoms.
Seizures can affect people in different ways, depending on
which part of the brain is involved.
Possible symptoms include:
Uncontrollable jerking and shaking . Called a ‘fit’.
Losing awareness and staring blankly into space.
Strange sensations - such as a ‘rising’ feeling in the
tummy, unusual smells or tastes, and a tingling feeling in
their arms or legs.
Sometimes they might pass out and not remember what
Epilepsy is usually a lifelong condition, but most people
with it are able to have normal lives if their seizures are well
It is good to find out as much as you can about what sort
of epilepsy they have. Different sorts of epilepsy produce
different fits, need different treatments and can effect their
life in different ways. Some sorts of epilepsy you can grow
out of. Other sorts of epilepsy require treatment even when
they are an adult.
Seizures can frighten them or others, they can stop them
doing things, can be embarrassing, whether they are at
home or school or out with their friends. The aim of the
treatment is to control their seizures without giving them
any side-effects from the treatment. Their doctor will
probably suggest they take medication to try and stop
seizures from happening. These are called anti-epileptic
It’s really important to take AEDs exactly as the doctor
says. If they even miss one dose of their AEDs they might
have a seizure.
It’s also a good idea to keep a seizure diary. They can write
When they’ve had a seizure.
What they were doing or how they were feeling before
each seizure, to see if they can find any patterns or
When they last increased the dose of their tablets.
Any side-effects or their AEDs.
Anything else they think might be important.
Then, when they see the doctor, they can see straight
away what’s been happening. And whether, for example,
they might need to increase their AEDs.
Some things make seizures more likely for some people
with epilepsy. These are often called ‘triggers’. Here are
some common triggers:
Missing doses of their epilepsy medication.
Drinking too much alcohol.
Lack of sleep.
Strobe lighting in clubs, cinema etc.
Looking after their general health can really help with seizure
control. Sometimes they might feel anxious, stressed or
depressed about their epilepsy and the effect it seems to be
having on their life. Make sure they find someone they can
talk to about how they’re feeling. Being able to talk to
someone about their epilepsy can be one of the best ways
of helping themself. That way it’s less likely you’ll keep it all
inside and feel like no-one understands them.
Making sure their school knows about their epilepsy it will
give them the best chance of getting the learning, social
and health support they need.
If they feel like they’re struggling with their learning get them
to talk to their teacher or head of year, or whichever adult in
school they feel okay with. The school may talk with them
and possibly you as parents. They may want to talk about
additional support they might need. They may advise that
they meet with the school nurse so she can help draw up a
healthcare plan to support them in school. This could help
the teachers understand their situation better.
Exams are often stressful which can make seizures more
likely for some people. If they know that stress triggers their
seizures, they need to learn how to minimise it. Preparing
well in advance for an exam can help or they could try
learning a relaxation technique. If they need extra help, get
them to talk to their teachers well before exam time. They
might need extra time to finish, or an early exam might be
difficult for them if they have seizures in the morning.
Having epilepsy can make them feel different, especially if
they can’t join in with things their mates are doing. They
might feel under pressure to drink or take drugs and worry
about the consequences. They may be fed up having to
consider their epilepsy. People might make fun of their
epilepsy or they might want to hide it. It’s up to them how
much they tell. Many young people find they can relax more
if a trusted friend knows what to do if they have a seizure.
If their situation gets them down it really helps to talk to
someone who understands. This might be the school
nurse, a person they trust, a local support group, a helpline
or online in a forum.
The Bathroom - This is the place where they are more likely to come to harm. Showers are safer than baths but
baths can be ok if they follow some simple advice. It is not
a good idea to have a bath if there is no-one in the house
at the time just in case they have a seizure.
Let someone know that they are going to have a bath,
don’t lock the bathroom door - they could always put
something on the door that will tell their family they are
having a bath.
Swimming - Swimming is not a good idea if their seizures
are not controlled and are a problem. If seizures are usually
controlled they may want to go with their friends or family.
Public pools have a lifeguard on duty. The epilepsy nurse
can give them an ID card to give to the lifeguard which tells
them that they have epilepsy, and what their seizures are
like. It is not a good idea to swim on their own.
Cycling - We always recommend that anyone who uses a
bike wears a helmet, just in case they fall or get knocked
off their bike, it helps to protect their head.
Other sports - Most sports and activities are fine for
people with epilepsy. This includes almost everything they
might want to do. For example: football, rugby cricket,
hockey, netball, basketball, netball, rounders, baseball,
athletics, cross country, judo and other martial arts,
dancing (all types), golf, gymnastics, circuit training, gym
workouts and so on.
More difficult areas are swimming, sailing and canoeing -
although these can be ok. For more information they
should ask their epilepsy nurse or doctor.
Lots of common seizure triggers can crop up on holiday:
So get organised to make sure the holiday goes without a
hitch. Before they go make sure they’ve got enough
medication and adequate travel insurance. They can’t get
an NHS prescription for more than 3 months so if their trip
is for longer, they must speak to their doctor. Remember
that they still need to take their medication at the same
(UK) time. If they’re flying keep their medication with them
in case their luggage goes missing. Carry snacks with
them, drink plenty of water and take time out to get over
any jet lag. Sickness and diarrhoea can stop their antiepileptic
medication from working properly. Being sick can
also cause dehydration, low blood sugar and poor sleep
and these can all make a seizure more likely.
Medical ID jewellery and ID cards let people know that they
have epilepsy in case they have a seizure when they are
out on their own. The card explains what to do and who to
contact if they have a seizure. Ambulance staff and police
will usually look for medical ID jewellery if they are found
unconscious. It lets them know important facts about their
condition. There are lots of styles and they don’t need to
look obvious. For more information visit
Young epilepsy helpline 01342 831342
020 8770 5409