June 15, 2021

What is status epilepticus? Everything you need to know

About Epilepsy

Status epilepticus is a seizure that lasts longer than 5 minutes. Learn about status epilepticus treatment, how to recognize it and the risks.

Whether you are driving a car or playing sport, there are dangers involved in almost any part of life. Most of the time nothing bad happens but it is important to be aware of the risks. The same goes for medical conditions. Most people with epilepsy never experience status epilepticus, which is an extreme form of seizure. But it is important to be aware of the risks.

So, what is status epilepticus?

Status epilepticus is a medical emergency

Status epilepticus definition

Status epilepticus can be defined as any seizure which lasts for more than five minutes, or two or more seizures where you do not fully recover between them. Most seizures last less than five minutes then stop on their own. Seizures which last longer than that normally need medical intervention to make them end.

If someone has status epilepticus symptoms this is a medical emergency. You must call 911 if the seizure lasts for five minutes or more.

Status epilepticus can cause different kinds of seizures:

  • Tonic-clonic (convulsive) seizures where you fall over and shake continually
  • Non-convulsive status epilepticus where you may behave unusually, cannot communicate and appear to be daydreaming for hours or days

Who is affected by status epilepticus?

Status epilepticus does not only affect people with a history of epilepsy. In fact only one quarter of status epilepticus cases involve people with epilepsy. Status epilepticus symptoms can affect anyone for different reasons, including:

  • Stroke (blood clot in the brain)
  • Brain tumor
  • Alcohol withdrawal (drinking too much alcohol then stopping too fast)
  • Head injury
  • Low blood sugar
  • HIV
  • Diseases like malaria

Status epilepticus is more likely to affect children or older people.

If you do have epilepsy, status epilepticus is most likely to happen if you stop taking your seizure medicine suddenly or change your medication. This is why it is so important to follow your doctor’s advice on when to take your anti epilepsy drugs.

What is status epilepticus risk?

There are around 150,000 cases of status epilepticus each year in the United States (remember that about three quarters of those people probably don't have epilepsy). Research published by NCBI estimates that up to one third of people who experience status epilepticus die from it. It can also cause brain damage.

Among those who have epilepsy, statistics suggest that status epilepticus will affect between 1% and 16% in their lifetime. So, if you do have epilepsy your chances of experiencing status epilepticus are low. But, just like the dangers of driving a car, it cannot simply be ignored.

Understand epilepsy: What happens in your brain during a seizure?

Status epilepticus guidelines for treatment

If you have epilepsy, there is a risk that you may experience status epilepticus. You should therefore speak to your doctor about creating a treatment plan.

In most cases status epilepticus guidelines say that you should call 911 and head straight to the emergency room if it happens. 

However your doctor may advise using emergency medication which you can store at home. Someone you live with can give it to you if it is needed. That person should always receive training from a specialist before using this kind of medication.

Status epilepticus treatment will change depending on your age, medical history and the cause of the seizures. Treatment usually involves:

  • The ambulance crew will likely have some emergency medication available
  • Once you arrive at ER, the doctors may give you oxygen and put you on an IV drip
  • They will choose anti-seizure drugs that are appropriate for you
  • Use an EEG to understand what is happening in your brain
  • If you are allergic to any epilepsy drugs write this down and keep it in an epilepsy bracelet that the doctor can find

Reduce the need for status epilepticus treatment

Most people with epilepsy will never experience status epilepticus. Nevertheless, it is important to be aware of the risks and have a plan in place in case it ever happens to you. By following your doctor's treatment guidelines and following your epilepsy management plan you will make it even less likely.