What epilepsy is
Epilepsy is a common condition that affects the brain and causes repeated seizures. A seizure is a sudden burst of electrical activity in the brain that briefly changes how it works. Seizures often happen suddenly and without warning, usually last a short time — seconds or minutes — and most stop by themselves.
There isn't just one kind of seizure. The type most people picture is a tonic-clonic seizure, where the person goes stiff, loses consciousness, falls, and jerks or shakes. But others look very different: in a focal seizure, someone may seem confused or unaware, pluck at their clothes, smack their lips, swallow repeatedly, or wander — and may not know what they're doing. Knowing this helps you recognise that not every seizure involves collapsing and shaking.
The most useful thing you can learn
If you support someone with epilepsy, the single most valuable thing is to know what to do when a seizure happens — and to know the person's own care plan. Most people with epilepsy have a care plan, agreed with their doctors and family, that says exactly what to do during their seizures, how long their seizures usually last, and when to get help. That plan comes first. The general guidance below is for when you don't have a plan to hand, or for a seizure in someone you don't know.
What to do during a tonic-clonic seizure
The charities Epilepsy Society and Epilepsy Action sum it up simply — stay Calm, Cushion, Call if needed. In a bit more detail:
- Stay calm and stay with them. Your calm presence matters, and you should stay until they've fully recovered.
- Note the time it started. This is genuinely important — the length of the seizure decides whether you need to call 999.
- Cushion their head with something soft, like a folded jumper, to protect them from injury.
- Clear the area of anything hard, hot, or sharp they could hurt themselves on.
- Once the jerking stops, put them in the recovery position (on their side), which helps keep their airway clear, and reassure them as they come round.
- Look for a medical ID — a bracelet, card, or jewellery — which may tell you about their epilepsy and what to do.
What you must NOT do
These matter just as much, because instinct can lead people wrong:
- Do not put anything in their mouth — not a spoon, not your fingers, nothing. It's a myth that someone can "swallow their tongue", and you can cause serious injury.
- Do not restrain them or try to stop the movements.
- Do not move them, unless they're in immediate danger (for example, next to a hot cooker or at the top of stairs).
- Do not give food or drink until they have fully recovered.
After a tonic-clonic seizure, many people are very tired, confused, or upset, and may want to sleep. Full recovery can take from several minutes to hours, sometimes longer. Gentle reassurance and a calm space are exactly what's needed.
When a seizure is a 999 emergency
Here's the crucial part. Most people with epilepsy do not need an ambulance every time they have a seizure — their body usually returns to normal on its own, and their care plan reflects that. But you should call 999 if any of these apply:
- the seizure lasts 5 minutes or more (this is why you note the time)
- one seizure follows another without the person recovering in between
- the person is seriously injured during the seizure
- they have trouble breathing after the seizure
- they don't regain consciousness or don't come round properly
- it's their first-ever seizure, or you don't know whether they have epilepsy
- you're worried at any point — trust that instinct
A seizure that lasts too long, or repeated seizures without recovery, is called status epilepticus, and it's a medical emergency — call an ambulance immediately.
A note on emergency rescue medicine
Some people with epilepsy are prescribed emergency rescue medicine to stop a seizure that goes on too long. It's important to be clear about this: giving that medicine is not something to do untrained. It requires specific training and the person's own written protocol setting out exactly when and how to give it. If you haven't been trained and given that protocol, your job is to follow the general first aid above and call 999 when the rules say to — not to administer rescue medicine. Training is available (for example, from Epilepsy Society) for carers who need it.
Helping day to day
Beyond seizures themselves, supporting someone with epilepsy is mostly steady, practical care:
- Help them keep to their medicines routine. Regular seizure medicines are what keep many people's epilepsy controlled, so supporting their own prescribed routine — without changing or skipping doses — matters a lot. Never stop or change epilepsy medicines without their team.
- Help reduce triggers. Tiredness, missed medicines, stress, and (for some) flashing lights can be triggers. Knowing the person's triggers helps.
- Keep a seizure diary if helpful. Noting when seizures happen, how long they last, and what they looked like gives the person's team valuable information.
- Notice and report changes. More frequent or different seizures should be passed on for review.
Knowing your role
Your role is to keep the person safe during a seizure, follow their care plan, stay calm, and call 999 when the rules say to — not to diagnose, to give emergency medicine you haven't been trained to give, or to change their medicines. When in doubt, get help.
The takeaway
Helping someone through a seizure isn't about being an expert — it's about staying calm, keeping them safe, knowing what not to do, and recognising the few clear signs that mean call 999: five minutes or more, repeated seizures, injury, breathing trouble, no recovery, or a first-ever seizure. Learn the person's care plan, and you'll be ready to help well when it counts.
Where this comes from
- NHS — what to do if someone has a seizure (nhs.uk)
- Epilepsy Society — seizure first aid (epilepsysociety.org.uk)
- Epilepsy Action — first aid and status epilepticus (epilepsy.org.uk)
This article is general information to build awareness. It is not medical advice and not a substitute for a person's care plan or their epilepsy team. Always follow the person's care plan, only give emergency medicine if specifically trained and authorised to, and call 999 when the emergency signs above apply.