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Status epilepticus and emergency treatment

The following information covers emergency treatment for seizures in the UK. If you are looking for information in another country, please contact your local epilepsy organisation

Most people with epilepsy have seizures that last a short time and stop by themselves. But sometimes, a seizure can last too long and become status epilepticus. Some people may need emergency medicine to treat status epilepticus.

What is status epilepticus?

Status epilepticus (sometimes just called status) is seizure activity that lasts too long. It happens when a seizure doesn’t stop in the usual time, or when someone has seizures one after another without recovering in between. Status epilepticus can happen with any type of seizure.

Status epilepticus can happen in people who have been diagnosed with epilepsy, but also in people who have never had a seizure before. For example, it can happen because of a stroke or head injury, or because of drug or alcohol abuse.

Convulsive (tonic-clonic) status epilepticus

Convulsive status epilepticus is when:

  • A tonic-clonic seizure lasts for 5 minutes or more, or
  • One tonic-clonic seizure follows another without the person regaining consciousness in between

If either of these things happen, the person needs urgent treatment to stop the status before it causes long-term damage. If convulsive status epilepticus lasts for 30 minutes or longer it can cause permanent brain damage or even death.

Other types of status epilepticus

Other types of status epilepticus can happen. For example, some people with a rare type of epilepsy called Lennox-Gastaut syndrome may have tonic status epilepticus. This is when a person has repeated tonic seizures where their whole body stiffens, with little or no recovery in between.

Some types of status, such as absence status and focal impaired awareness status, can be harder to spot. If someone is in one of these types of status (often called non-convulsive status) they may not show any obvious signs of having a seizure. They may appear confused and less responsive than usual, or have changes to their speech or behaviour for no clear reason. Sometimes these changes can last for hours or even days.

Unlike convulsive status epilepticus, there is not much evidence to say when other types of status become an emergency, or whether they cause long-term damage. If someone you care for is at risk of any type of status epilepticus, their specialist should tell you the signs to look out for, and when to give treatment or get help.

How can I reduce my risk of status epilepticus if I have epilepsy?

Here are some ways to reduce your risk of having status epilepticus:

  • Always take your epilepsy medicine regularly, and never stop or reduce your medicine without advice from your doctor or nurse. Missing doses and stopping epilepsy medicine suddenly are common triggers for status epilepticus
  • Get the right treatment and care for your epilepsy so you have as few seizures as possible
  • Limit the amount of alcohol you drink, but if you are alcohol dependent get medical advice before stopping. Alcohol withdrawal after excessive drinking can be a trigger for status epilepticus
  • Find out if you have any triggers for your seizures, and avoid them where you can

What is the treatment for status epilepticus?

In hospital, there are a number of medicines doctors can use to stop status epilepticus. They usually give these medicines by injection or drip. Emergency medical services (paramedics) also carry medicine so they can start treatment as soon as they arrive.

If someone with epilepsy is at known increased risk of status epilepticus, their doctor may prescribe them emergency medicine (sometimes called rescue medicine). The aim of emergency medicine is to stop the status early on, before it causes long-term damage. If the emergency medicine stops the status, the person may not need to go into hospital. Emergency medicine can be given by a family member, carer, teacher or colleague, as long as they have been trained in how to give it.

Types of emergency medicine

There are two main types of emergency medicine licensed for use in the UK:

  • Buccal midazolam: this is given by dropper, between the person’s gums and cheek. Brand names include Buccolam and Epistatus.
  • Rectal diazepam: this is given rectally (into the back passage). Brand names include Diazepam RecTube and Stesolid.

A small number of children are prescribed a different type of emergency medicine called rectal paraldehyde.

Care plans

The National Institute for Health and Care Excellence (NICE) says that everyone with epilepsy should have a care plan. A care plan is an agreement between the person with epilepsy, their healthcare professional, and where appropriate, their family or carers. The care plan should say how to tell if the person is in status epilepticus and what to do. It should also include details of any emergency medicine that has been prescribed, who is trained to use it and when to give it.

How can I get training to give emergency medicine?

If you may need to give emergency medicine to your child, family member or someone you care for, you should be shown how to use it. An epilepsy specialist nurse or community nurse will usually give you this training. Tell the nurse if other people, such as school staff, may need to give the emergency medicine. The nurse may be able to train them as well. Schools may also be able to arrange training through their school nurse or local community nursing team.

There are a number of training providers that deliver emergency medicine training. Contact the Epilepsy Action Helpline for a list of training providers.

Epilepsy Action has advice for care home providers on buccal midazolam training.

Further resources

Download a template buccal midazolam care plan or contact the Epilepsy Action Helpline to request a paper copy. A rectal diazepam care plan is also available on request.

The makers of Buccolam and Epistatus have websites with instructions and videos showing how to administer their products.

Evelina Children’s Hospital has written a leaflet with guidelines for administering rectal paraldehyde to children.

 

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
F084.04

Epilepsy Action would like to thank Professor Hannah Cock, Professor of Epilepsy and Medical Education and consultant neurologist, St George’s University Hospitals NHS Foundation Trust, for her contribution to this information.

Professor Cock has been a principal investigator for studies with GWPharma, Novartis and Bial, with remuneration to her department. She has received honoraria for speaker and advisory board engagements for Sage Pharmaceuticals Ltd, Eisai Europe Ltd, UCB Pharma Ltd, European Medicines Agency, UK Epilepsy Nurse Specialist Association, non-financial support from Special Products Ltd, grants from U.S NIH Institute of Neurological Disorders and Stroke, non-financial support from International League Against Epilepsy, Status Epilepticus Classification Task Force and Epilepsy Certification (education) Task Force, and non-financial support from European Academy of Neurology.

This information has been produced under the terms of Epilepsy Action's information quality standards.

  • Updated May 2019
    To be reviewed May 2022

Comments: read the 4 comments or add yours

Comments

Hi
I have a 13 yrs old son who living with epilepsy for 3 yrs nw, recently he had continuous seizures but for few seconds his body stiffened took him to hospital they injected him after few hrs we were discharged nw my problem he has insomnia ,and m not sure about the brain whether it's damaged he can't talk properly he takes time to respond
Thank you

Submitted by Zanele

I have had seizures since 18 months old. Had petti mals through my schooling I had surgery done I on in 1988 ,that went well for 9 years ,. After I started get seizure more survive and having tonic conic and statue epilic which last 9 . 10 minutes. Could this be because scar tissues has moved . from time to time . Thanks Sue.

Submitted by Susan trelfer

Hi Sue – We know that scar tissue can cause seizures to happen. But we aren’t medically trained so can’t say whether these seizures are caused by scar tissue moving. This might be something to talk to your epilepsy doctor or nurse about.

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy...

Many thanks
For your help !

Submitted by Susan trelfer

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