Status epilepticus: what it is, when to call 999 and how it is treated

Most people with epilepsy have seizures that last a short time and stop by themselves. The NHS says a seizure usually lasts a few seconds or minutes and stops without help. Status epilepticus, sometimes shortened to status, is when this does not happen. Epilepsy Action describes it as seizures that do not stop in the usual time, or repeated seizures without recovery between them.

It is a problem of the brain unable to switch a seizure off. Because the seizure goes on, the body and brain are put under strain, and the longer it continues the harder it can be to stop and the greater the risk of harm. That is why every guideline-based message is to treat it as an emergency and to call an ambulance without waiting to see whether it settles.

Epilepsy Action points out that status epilepticus can also happen to someone with no previous seizures, caused by another condition. It also notes that non-epileptic seizures can often go on for longer and can be confused with status epilepticus, which is one of the reasons assessment by an emergency team matters.

The NHS says to call 999 if someone is having a seizure and any of the following apply. It is the first time it has happened. It lasts longer than is usual for them, or longer than 5 minutes if you do not know how long their seizures usually last. They do not recover as usual afterwards, or they have another seizure without recovering in between. They have now had 3 or more seizures in 24 hours.

Epilepsy Action advises calling an ambulance if you think someone is in status epilepticus. If the person has an emergency management plan or care plan, follow it, which may include giving their prescribed rescue medicine. It stresses that rescue medicine should only be given by someone who has been trained to do so.

The NHS adds that people with epilepsy do not always need to go to hospital when they have a seizure, because they usually have a care plan that says what to do, such as giving emergency medicine and when to call 999.

Epilepsy Action describes three patterns. The distinction matters because the signs, and how easily they are recognised, are very different.

In people with epilepsy, Epilepsy Action says one of the most common causes of status epilepticus is low epilepsy medicine levels, for example from missed doses or stopping suddenly. Other causes in adults, with or without epilepsy, include stroke, metabolic disorders such as diabetes, alcohol abuse or withdrawal, brain injury or head trauma, recreational or illegal drugs such as cocaine and amphetamines, and central nervous system infections such as meningitis.

You are more likely to experience status, Epilepsy Action says, if you have drug-resistant (refractory) epilepsy with focal onset seizures. It is difficult to say exactly how common it is, because studies have looked at different groups; one study it cites estimated that around 1 in 7 people with epilepsy may go to hospital with status at some point. It is more common in men, and convulsive status is more common than non-convulsive.

Epilepsy Action explains that doctors in hospital can use several medicines to stop status epilepticus, and that these will likely be given through a drip in the arm (intravenously). You may be referred to the neurology department for more tests. Paramedics also carry medicine so that they can start treatment as soon as they arrive.

The charity says the earlier you are treated, the more successful treatment is likely to be. That is why the advice is to call for an ambulance rather than wait to see whether the seizure settles.

People at risk of status epilepticus may be prescribed emergency, or rescue, medicine as part of their own emergency management plan. Its aim is to stop the seizure before it causes any long-term complications. Epilepsy Action says you may not need to go to hospital if the medicine works and you recover well.

Epilepsy Action describes two main types of rescue medicine licensed in the UK for a status emergency: buccal midazolam, given by plastic syringe between the gum and cheek, and rectal diazepam, inserted into the bottom. Some children may be prescribed rectal paraldehyde. These are sedatives and can make a person sleepy. Rarely they can cause breathing problems, so the person needs to be watched closely while they recover.

Only someone who has been trained should give rescue medicine. An epilepsy specialist nurse or community nurse will usually provide the training. Epilepsy Action says NICE recommends that everyone with epilepsy has an emergency management plan, which sets out what care is needed in an emergency, any rescue medicine, who is trained to use it and when to give it.

Epilepsy Action states that convulsive status epilepticus is a life-threatening neurological condition and that some people may die during an episode. This may be more likely if the person is over 65, has more than one medical condition, or if the brain is starved of oxygen for too long. All types of status can cause brain damage.

Recovery may involve health problems that improve over time but not always: speech and language problems, loss of muscle control, uncontrollable movements, memory problems and behavioural problems. Recovery depends on the cause, how long the seizures lasted, the person's age, other conditions and the treatment received.

Epilepsy Action lists practical steps: take epilepsy medicine as prescribed and try not to miss doses; do not stop it suddenly without speaking to the epilepsy specialist; make sure you have rescue medicine if you have cluster or prolonged seizures (cluster seizures are typically 3 or more seizures that stop by themselves in 24 hours); tell the specialist if you notice a change in your seizure pattern or a new type of seizure; limit alcohol, because withdrawal can trigger status; avoid recreational drugs; avoid triggers such as lack of sleep; and manage other conditions such as diabetes well.

The NHS says people with epilepsy should have check-ups at least once a year and a care plan agreed with their team that tells family or carers what to do when a seizure happens.

Status epilepticus is treated through 999 and an NHS emergency department, with follow-up in neurology. This is not something to plan around private care.

Afterwards, some people use private neurology appointments, EEG monitoring or specialist epilepsy services for a second opinion or faster review of medication. If you do, share any records with your NHS epilepsy team so that your care plan and rescue medicine arrangements stay up to date. The NHS says people with epilepsy should have check-ups at least once a year and a care plan agreed with their team.