About one in ten (10%) people having palliative care 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 written 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.
What are seizures?
Seizures happen when abnormal electrical activity in the brain causes a temporary change in how someone behaves.
There are different types of seizure, affecting different parts of the brain.
What is a focal seizure?
Focal seizures are also known as partial seizures. They start in one side of the brain and can be simple or complex.
Simple focal seizures
When someone has a focal seizure, they may be fully aware of what’s going on. This is called a simple focal seizure. They may experience:
- an unusual feeling before the seizure, such as fear or déjà vu
- a strange taste or smell
- stiffness or twitching in part of their body.
Complex focal seizures
Complex focal seizures cause people to become less aware of what’s going on around them. The person seems to be awake but they may be confused. They may also:
- roll their eyes, or stare at a fixed point
- be unable to move
- have repetitive movements, such as grimacing, lip smacking, snapping their fingers, chewing, running or pulling at their clothes
- become agitated and resist any help.
Complex focal seizures usually last for about three minutes. Afterwards, the person may be sleepy or confused and they may have a headache. These symptoms can last for a few hours.
What is a generalised seizure?
Generalised seizures start in both sides of the brain. There are different types of generalised seizure.
The type that most people have heard of is a tonic-clonic seizure. These seizures were previously known as grand mal seizures or fits.
In the tonic phase, the muscles stiffen and the person may fall to the floor. This is sometimes followed by the clonic phase, where the body shakes and jerks. The clonic phase usually lasts less than two minutes but can last longer. Not all generalised seizures involve the clonic phase.
Other signs of a generalised seizure can include:
- losing consciousness
- calling out, caused by air being pushed past the voice box
- irregular breathing
- losing control of the bladder or bowels
- biting the inside of the cheek or tongue.
After the seizure, the person may fall asleep. They will wake up gradually and may be confused or have a headache.
What is an aura?
The symptoms of a simple focal seizure can sometimes be a warning that someone is about to have a complex focal or generalised seizure. When this happens, the simple focal seizure is called an aura.
Even if someone does not remember having a seizure, they may remember the aura.
People do not always get auras before having a seizure. If someone has a simple focal seizure on its own, they may still describe their symptoms as an aura.
What causes seizures?
Some people may have a history of seizures that are unconnected to their terminal illness. Others may start to have seizures as a result of their terminal illness.
Pre-existing seizures
If the seizures started before someone’s terminal illness diagnosis, these may have been caused by:
- epilepsy
- brain injury
- central nervous system infection.
These seizures may become harder to manage when someone has a terminal illness. Some medicines used to treat a terminal illness or its symptoms can increase the risk of seizures or affect seizure medication.
Irregular sleep patterns and lack of sleep can trigger some seizures. Other possible triggers include stress, alcohol and recreational drugs.
Seizures during terminal illness
Possible causes of seizures connected with terminal illnesses include:
- primary or secondary brain tumours
- cerebrovascular disease, such as stroke
- biochemical abnormalities, such as low sodium or high levels of calcium or urea in the blood
- medicines – side effects or interactions between medicines.
Seizures are more common in people with brain tumours or a history of seizures. But some people have a seizure for the first time in the last few weeks of life.
How are seizures managed?
Some people may take regular medication, such as carbamazepine or levetiracetam, to prevent seizures. The type of medication will depend on what’s causing the seizures and on any other medicines someone is taking.
The doctor or specialist nurse will assess the person and may prescribe a suitable medicine. People may need to try different medicines to find the one that works best for them. In some cases, they may need to take more than one medicine. The doctor will monitor the person’s progress. If they have another seizure, the doctor will review their medication.
A neurologist or specialist nurse may give the person a care plan. This could include information about:
- their treatment
- what to do if they miss a dose of their medication
- what to do if the medication does not work.
People usually take seizure medication by mouth. But if someone is unable to swallow, 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 (buccal or oromucosal medication).
Some seizure medicines, such as midazolam, can cause sedation, so they are not suitable for everyone. But doctors may prescribe these if someone is nearing the end of life and their seizures are not under control.
What can I do when someone is having a seizure?
The person may have a care plan, containing details of what to do if they have a seizure. This may include information about how to manage the seizure and who to contact. Always follow the care plan, if there is one.
If in any doubt, call for help from healthcare professionals – even if the person has a history of seizures.
Here are some general tips on what you can do if someone is having a seizure:
1. Try not to panic
Staying calm and following these steps will help you cope.
2. What’s the time?
Make a note of what time the seizure starts, so you can record how long it lasts. Note anything unusual before the seizure started.
3. Make them safe and comfortable
Only move someone if they’re in danger, for example, near stairs. If they’re on the ground, put something soft under their head and loosen any clothing around their neck. Never put your fingers or anything else in their mouth.
If they’re vomiting or bleeding from the mouth or nose, place them in the recovery position if possible, to reduce the risk of aspiration (choking).
4. Get help
If there’s a healthcare professional close by, give them as much information as you can about the person and the seizure.
Call 999 if any of these things happen:
- there’s nobody available who’s trained to deal with seizures or
- this is the person’s first seizure or
- the seizure lasts more than five minutes or
- the person does not regain consciousness.
5. Keep them calm and tell the healthcare team
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. Note the time the seizure stops. Contact the person’s GP or specialist nurse so they can review the person.
The person may be able to hear you during the seizure. Reassure them that you’re there and keep talking calmly to them.
How long do seizures last?
Seizures usually only last two to three minutes but it can feel a lot longer than this. You may need to reassure anyone else who is there. If possible, take children and other vulnerable people out of the room.
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. Healthcare professionals might be able to give rescue medication if it’s in the person’s care plan, and they have been trained to give it. They may give it as an injection under the skin or into the muscle, an oral tablet or spray between the gum and cheek, or a suppository into the rectum.
What happens after a seizure?
The person may sleep for a while after having a seizure. Observe them closely. If a healthcare professional is with you, they might measure the person’s blood pressure, pulse and oxygen saturation. Look out for any signs that they might be about to have another seizure.
If the person has made it clear that they do not want to have emergency services or be admitted to hospital, it may not be appropriate to call 999. This might be recorded in their advance care plan, if they have one.
When should I ask for help?
If someone is having an unexpected seizure and there’s nobody trained to deal with it, call 999. Give the paramedics as much information as possible about the person and the seizure. Tell them if the person has an advance care plan or emergency care plan. Have it available when the paramedics arrive.
When someone has a seizure for the first time, their GP may refer them to a neurologist to find out the possible cause. The neurologist or a specialist nurse will explain what type of seizure the person is having and whether they need any treatment.
After a seizure, the person’s GP or specialist nurse should be informed, even if they did not need treatment. They may need to monitor the person and change their medication.
Where to get support
If you have questions or need extra support managing someone’s seizures, contact the person’s healthcare team. Their GP, district nurse, or specialist nurse should be able to advise you on next steps and give you practical advice.
To get 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.