Seizures

Between 10 and 15 out of every 100 people having palliative care (10-15%) will have a seizure or seizures. If someone has a seizure, you can help by keeping them safe and knowing when to call for medical help.

This page is for people caring for someone living with a terminal illness. But it may also be helpful for people living with a terminal illness and health and social care professionals.

If in any doubt, contact a healthcare professional for help - even if the person has a history of seizures. In working hours, this might be their district nurse or GP. Out of hours, it might be your out-of-hours GP service or 999.

Here’s what you can do if someone is having a seizure:

Staying calm and following these steps will help you to manage the situation.

Make a note of what time the seizure starts, so you can record how long it lasts. You could start a stopwatch on a phone, or check your watch. Note anything unusual before the seizure started.

While someone is having a seizure, only move them if:

If they’re on the ground, put something soft under their head, like a cushion or folded up jacket. Try to loosen any clothing around their neck, like a buttoned collar or scarf.

Never put your fingers or anything else in their mouth.

If they’re vomiting or bleeding from their mouth or nose, try to put them in the recovery position. This helps to reduce the risk of choking.

If you’re not experienced and confident to deal with the person’s seizure, contact the person’s GP or another healthcare professional for help. When help arrives, give them as much information as you can about the person and the seizure.

Call 999 if:

Tell the 999 call handler or responder if the person has an advance care plan or emergency care plan. This can help to avoid unwanted hospital admissions.

When the seizure is over, put the person in the recovery position and stay with them while they recover. Talk to them calmly to reassure them and monitor their condition.

If you can, write down the time the seizure started and stopped. Note down anything else you noticed before, after or during the seizure. See How to record and describe a seizure below.

Contact the person’s GP or specialist nurse so they can review the person.

Although it might feel difficult, some carers find that filming the seizure can help them to show healthcare professionals what happened. Seeing the seizure can help the healthcare team to understand what treatment is needed.

The person’s healthcare team might ask you some questions about the seizure. So it could be helpful to note down some things you notice, especially if the person cannot remember it.

Think about what happened before, during, and after the seizure. It might be helpful to write down:

Seizures happen when there’s abnormal electrical activity in the brain. They cause a temporary change in how someone behaves.

There are different types of seizure that affect different parts of the brain. Different types of seizures have different symptoms.

Some types of seizure cause the person to lose consciousness, and have shaking or jerking movements.

Other types of seizures are harder to recognise. The person might become less aware of their surroundings, stare blankly or roll their eyes, have unusual eye movements, or not be able to move.

Possible causes of seizures connected with terminal illnesses include:

Seizures when someone has a terminal illness are more common in:

But some people experience seizures for the first time as a symptom of their terminal illness.

If the seizures started before someone’s terminal illness diagnosis, these may have been caused by:

The person’s healthcare team may review the management of these types of seizures if the person has a terminal illness. Irregular sleep patterns and lack of sleep can trigger some seizures. Other possible triggers include stress, alcohol and recreational drugs.

Some people with dementia might develop seizures. People with dementia might have signs of seizures which are easier to miss, like becoming unresponsive, staring or blinking. These features can be mistaken for symptoms of dementia, rather than a seizure.

If you’re caring for someone with dementia and are worried about seizures, speak to their healthcare team. They’ll be able to assess the person. If needed, they can give them a care plan and medicines to help manage seizures.

It can be hard to know if someone is about to have a seizure, especially if they’ve not had one before. But identifying when a seizure is about to happen can help keep the person safe and get the right aid quickly.

Signs that someone is about to have a seizure can include:

Everyone is different – so signs that someone might be about to have a seizure will vary. Some people have these symptoms hours or days before a seizure happens. Not all seizures have noticeable warning signs.

Seizures usually only last around three minutes. But they can feel a lot longer than this.

If a seizure lasts more than five minutes or the person has another seizure before they have recovered from the first one, they may need emergency medication. This is sometimes called rescue medication.

After a seizure, the person may feel sleepy. Monitor them and look out for signs that they might be about to have another seizure. See Signs someone is about to have a seizure above.

Make sure they are in a safe and comfortable place. It could be helpful to watch them until they are fully conscious again, or they have fully gone to sleep.

If anything feels different or unusual for the person you care for, contact their healthcare team for help.

Tell the person’s GP or specialist nurse, even if they did not need treatment. The GP or nurse may need to monitor the person, change their medication or refer them to a specialist.

After assessment, the healthcare team may give the person a care plan. This could include information about:

How seizures are managed will depend on if the person has had a seizure before, and what their care plan says.

Some people may take regular medication to prevent seizures. The type of medication will depend on what’s causing the seizures and any other medicines they are taking.

People usually take tablets. But in some circumstances, they may have an injection or a continuous infusion using a syringe driver. Another option is a tablet or spray used between their cheek and gum.

Seizures can be scary for you and the person having them. Knowing how to identify a seizure and what to do if one happens might help you feel more prepared. It might also help to share this information with family, friends or anyone else who supports the person having seizures.

Speak to a healthcare professional about what support is available for you. They might be able to help you understand what to expect from seizures, and who best to call in an emergency. They may also do things like create a care plan for seizures, review the person’s medicines, or refer them to a specialist, with the person’s consent.

To get non-urgent practical information or to talk to someone about how you’re feeling, call the free Marie Curie Support Line on 0800 090 2309* or email support@mariecurie.org.uk.