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Information about status epilepticus
- Status epilepticus is when seizures last too long
- It is a medical emergency that can happen with any type of seizure
- Some people are prescribed emergency medicine to treat status epilepticus
- If you have epilepsy, it is important to have an up-to-date care plan so that if status epilepticus happens, the people around you know what to do.
What is status epilepticus?
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 (you may hear it shortened to just ‘status’).
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.
There are many different causes. Status epilepticus can happen in people who have been diagnosed with epilepsy and 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
These can be harder to spot because the signs and symptoms can be less obvious. For example, someone who is in absence status or focal impaired awareness status may appear confused and less responsive than usual, or have changes to their speech or behaviour for no clear reason.
Non-convulsive status epilepticus can also be very serious for some people, depending on the cause of the seizure. 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 get help.
Non-convulsive status epilepticus usually needs specialist assessment and an EEG test to diagnose it and check for other possible causes that might have similar symptoms.
Other seizure types can also become status epilepticus if they go on too long. 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.
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
- Talk to your epilepsy specialist if you are worried about status epilepticus
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 straight into your body through a small plastic tube that is placed into a vein (known as a drip). Emergency medical services (paramedics) also carry medicine so they can start status epilepticus treatment as soon as they arrive.
If someone with epilepsy is at known increased risk of a dangerous type of status epilepticus, their doctor may prescribe them emergency medicine (sometimes called rescue medicine). It’s usually only prescribed for convulsive status epilepticus.
The aim of emergency medicine is to stop the status early on, before it causes long-term damage. If the status stops, the person may not need to go into hospital, depending on how well they are recovering, and what is in their care plan. 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 plastic syringe, between the person’s gums and cheek. Brand names include Buccolam and Epistatus
- Rectal diazepam: this is given rectally (inserted into the person’s bottom). Brand names include Diazepam RecTube and Stesolid
A small number of children are prescribed a different type of emergency medicine called rectal paraldehyde.
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. A care plan needs to be kept up to date and shared with the right people. It should also include details of any emergency medicine that has been prescribed, who is trained to use it and when to give it.
You can download a Care Plan and Review template from our website.
Which seizures can be treated with buccal midazolam?
Buccal midazolam is most often prescribed to treat prolonged tonic-clonic seizures.
It is recommended for:
- Tonic-clonic seizures over 5 minutes
- Repeated or cluster seizures (usually 3 or more seizures in 24 hours)
Buccal midazolam can be prescribed as an emergency medicine to stop other types of prolonged or cluster seizures. This could include prolonged focal impaired awareness, absence, tonic, atonic and myoclonic seizures.
Your care plan will tell you which seizure types buccal midazolam is prescribed for and when it should be given. For some people, it may say to give buccal midazolam sooner than 5 minutes.
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. We can’t recommend any particular training provider, but we have listed some options on our buccal midazolam page for professionals.
Template care plans for buccal midazolam and rectal diazepam are available on request from the Epilepsy Action Helpline.
Great Ormond Street Hospital has written a leaflet about giving a paraldehyde and olive oil enema (into the bottom) to children.
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