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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.

Further resources

Template care plans for buccal midazolam and rectal diazepam are available on request from the Epilepsy Action Helpline.

The makers of Epistatus have a website with instructions and a video showing how to administer Epistatus.

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 The Information Standard.

  • Updated May 2019
    To be reviewed May 2022

Comments: read the 4 comments or add yours

Comments

I have a 28 yr old son who was diagnosed with epilepsy at age 15. The seizures got progressively worse until age 21 when he was hospitalized to be evaluated to see if he was a candidate for brain surgery. It was determined that he was a candidate.
But with a change in medications and lots of prayer things turned around. He was 5 yrs seizure free and 3 yrs medication free. Then suddenly the seizures started coming back. He lived alone out of state.
He ended up on life support in January due to seizures. Status epileotus seizures I believe because he was home alone all day.
He has 2 different kinds of seizures. Tonic Clinic and partial complex seizures.
I'm concerned about any possible brain damage

Submitted by Deneen on

Hi Deneen

It’s great that your son was seizure free for that length of time. But it does seem that things are a lot more difficult now.

Here is our information about seizures that last a long time. I’m afraid there is a danger of brain damage when someone has been in a seizure for 30 minutes or more.

I wonder if your son has seen a specialist or is back on epilepsy medicine?

I am guessing you are in the US. You might find it useful to be in touch with the Epilepsy Foundation.

I really hope things settle down for him soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi
My father is 58 years old and on February 9,2017 he had first seizure but no one was there at the time of seizure and so doctor diagnosed it with mild brain stroke and given medication for it and after two and half month he got another seizure and this time luckily I was there with him,he was biting his own tounge and saliva was coming out of his mouth and he was making some weird noise from mouth too, his whole body was stretched and stiffen and he was unconscious too and this whole thing last for about 15 minutes, we took him to hospital and we came to know that it is seizure not a brain stroke,
But I am still confused about this diagnosis, from the symptoms he had which I mentioned above is it really a seizure? He had no past history or in family too no one had seizure before..

Please let me know what it is exactly ,can a seizure last for 15 minutes?
PS he was unconscious for about 1 hour during and after seizure

Submitted by Khyati on

Hi

Here is all our information about diagnosing epilepsy. It sounds very possible that what your father had was a tonic-clonic seizure.

It is possible to have a seizure that lasts a long time. And often people can take quite a while to come round fully from a seizure.

You might be interested in our information under What is epilepsy? As you can see for most people there is no known cause when they are diagnosed with epilepsy. It does come out of the blue and only rarely runs in the families.

I hope that helps. But if you feel it would be useful to talk this through, then feel free to give us a ring on our freephone helpline number. It’s 0808 800 5050.

Regards

Cherry, Epilepsy Action Helpline Team

Submitted by rich on

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