Status epilepticus, prolonged or cluster seizures, and emergency medication

What is status epilepticus? 

Most epileptic seizures do not last long and usually stop by themselves without the need for treatment. Status epilepticus happens when a seizure doesn’t stop in the usual time. If a seizure lasts for five minutes or more, it is known as status epilepticus, which is a medical emergency.  

If someone has seizures one after another for five minutes or more (without recovering in between) this is also status epilepticus. 

If status epilepticus lasts for 30 minutes or longer, it can cause brain damage or lead to death.  

Prolonged or cluster seizures 

When someone has a seizure that lasts for too long (a prolonged seizure) it is a medical emergency. A prolonged seizure lasts for at least 2 minutes longer than a person’s usual seizure. If this happens, you need to follow the emergency management plan from your epilepsy doctor or nurse. 

Cluster seizures are usually 3 or more seizures that stop by themselves in 24 hours. If you have cluster seizures, you will need to follow your emergency management plan from your epilepsy doctor or nurse.

Any type of seizure can happen in groups or clusters over hours or days. A person usually recovers between seizures and the clusters will end on their own. But you can be at risk of repeated clusters or status epilepticus if: 

• Seizure clusters last longer than usual 
• Seizures happen closer together 
• You don’t recover as well between seizures or clusters 
• The rescue medication doesn’t work 

What do I do if I think someone is in status epilepticus? 

If you think someone is in status epilepticus, call an ambulance.

If they have an emergency management plan or care plan, you should follow the instructions in their plan. Their plan may include giving them rescue medication. You should only give someone rescue medication if you have been trained to do so. 

How can I reduce my risk of status epilepticus? 

Herer are some of the things you can do to reduce your risk of having status epilepticus: 

• Always take your anti-seizure medication as prescribed by your doctor and try not to miss any doses 
• Do not stop taking your medication without speaking to your epilepsy specialist 
• If you have cluster or prolonged seizures, make sure you have rescue medicine  
• Speak to your epilepsy specialist if you’ve noticed changes in your seizures or had a different type of seizure 
• Don’t drink too much alcohol or use recreational drugs 
• If you know what your triggers are, try to avoid anything that triggers your seizures 
• If you have medical ID, you should wear or carry it with you in case you have a seizure when you’re out and about. 

If you are worried about status epilepticus, talk to your epilepsy specialist.  

Emergency medication for status epilepticus 

In the UK, the two main emergency medications for status epilepticus are:  

• Buccal midazolam 
• Rectal diazepam 

The dose of each of these drugs is based on your age.  

Care plan and individualised emergency management plan 

If you have epilepsy, you should have a care plan.  

A care plan is an agreement between you, your healthcare team and, when appropriate, your family or carers.  

Your care plan should include an individualised emergency management plan for status epilepticus, prolonged and cluster seizures.  

This should include details of how to respond, which emergency medication to use, how and when to give it, and who is trained to use it. 

Your parents or carers should be shown how to give you your prescribed emergency medication, along with any other adults who will be looking after you, including teachers at school. 

We’ve developed a ‘Record of use of emergency medication’ form, which they can use in case there’s a time you need emergency medication.  

Download the ‘Record of the use of emergency medication’ PDF

A healthcare professional should train you in how to give emergency medication. You shouldn’t be giving the medication unless you’ve been trained.  

For this reason, you should share your child’s individualised emergency management plan with your child’s school, so that it can be added their individual healthcare plan. 

Find out more about individual healthcare plans (IHPs)

Training courses 

Young Epilepsy runs training courses that cover epilepsy, seizure types, status epilepticus and how to give emergency medication, with practical sessions using a dummy.  

For details contact: 

training@youngepilepsy.org.uk