What is Status Epilepticus?

We are not doctors at Danish Care Technology, we don’t have the competence to advise on epilepsy and anti-seizure medication. Please contact your GP or Epilepsy Action if you have any questions.

In this article we describe mainly the tonic-clonic status epilepticus


Status Epilepticus explained in 10 points:

  1. Status epilepticus is a dangerous seizure that does not stop by itself. It does not just affect people with epilepsy. Everyone can get it and the risk increases with age.

  2. Status epilepticus prevents normal breathing. The brain can be permanently damaged by lack of oxygen.

  3. You can stop the status epilepticus by giving seizure medications.

  4. Speed is important. The sooner the patient receives medication, the shorter the period of oxygen deficiency in the brain.

  5. An emergency plan is an effective aid in status epilepticus. There should be people nearby who are trained to act properly and safely. Relatives should also be prepared for the situation. Practice the emergency situation.

  6. Epilepsy alarms are an effective tool for quickly detecting an epileptic seizure that can give important minutes of head start

  7. An Austrian study shows that approximately 40% of patients who were admitted to the hospital with status epilepticus had an epileptic seizure before. In the western world, about 1% of the population has epilepsy.

  8. The study also showed that per 100,000 adults per year, 36.1 people experience status epilepticus. Most of them are people without epilepsy.

  9. For people without epilepsy, status epilepticus is often caused by another disease. It may be a head trauma, cerebral hemorrhage, cancer or other serious illness.

  10. People with epilepsy have a good chance of surviving the status epilepticus if they get help quickly.


Status epilepticus is a dangerous seizure that does not stop by itself

Status epilepticus is a prolonged seizure that occurs in the brain. As with epilepsy, the brain experiences a high level of electrical activity, but unlike a normal seizure, the epileptic seizure does not stop by itself.

The status epilepticus is dangerous and can lead to brain damage and death if no quick and targeted treatment is performed.

The status epilepticus can occur both with and without convulsions. With convulsions, the doctor speaks of a convulsive (tonic-clonic) status epilepticus. If no cramps occur, it is a non-convulsive status epilepticus.

The tonic-clonic status epilepticus is considered to be the most dangerous because the cramps prevent normal breathing. But nevertheless both types are dangerous.

The duration of the seizure determines whether it is a status epilepticus.

  • If a seizure continues for more than 5 minutes, it’s a status epilepticus.

The boundaries are set by "The International League Against Epilepsy" (ILAE).

Before 2015, there was a different definition. At this time, the seizure had to last longer than 30 minutes before being classified as a status epilepticus.

This definition can still be read on many websites about status epilepticus. It should also be noted that research articles prior to 2015 use the old definition.

The name itself is a mixture of Latin and Greek, which translates to "a state of being taken over by something else". The name reflects the old superstition, where it was believed that a supernatural force took over the sick in a seizure.


In a status epilepticus can lead to severe oxygen deficiency

A seizure with cramps makes breathing difficult. If the seizure does not stop, a lack of oxygen gradually develops, which can lead to brain damage and death. The risk increases the more time passes until being treated.

After 30 minutes of continuous seizure activity, there is a significant risk of brain damage and death.

If the seizure proceeds without convulsions, the muscles of the body consume less oxygen. An attack without convulsions is still very dangerous. In addition, non-convulsive seizures are much harder to detect and diagnose.

It is also difficult to breathe during a "normal" tonic-clonic epileptic seizure. However, since the seizure is shorter, the lack of oxygen causes no permanent damage.


Most people with epilepsy will not suffer from a status epilepticus

If you have epilepsy you are at an increased risk of experiencing status epilepticus, but you can also get status epilepticus without ever having an epileptic seizure before.

In a new study from Salzburg in Austria, 40% of those admitted to hospital with the epileptic condition had an epileptic seizure. This must be considered among the facts that about 1% of the western population has epilepsy.

However, it also shows that most people with epilepsy never get status epilepticus. According to a study by the Epilepsy Foundation in the US, only 15% of epileptics have status epilepticus.


Status Epilepticus is often associated with other diseases

In people without epilepsy, the status epilepticus is often caused by severe brain disorders and acquired brain damage. The Danish Sundhedsstyrelsen writes this about the danger:

Recent Danish research at the University Hospital Odense shows a very high mortality related to the status epilepticus.

It can be seen that in 41 adults who were admitted to the hospital for the first time with the status epilepticus, which was not due to hypoxia in cardiac arrest, about every fourth patient died before getting out of the hospital.

The mortality for the next two years after the hospital visit was nearly 50%.

A more recent metastatic study shows that about 15% of all included studies with status epilepticus died

If you suffer from epilepsy, this certainly sounds frightening. But the following should be noted:

  • The status epilepticus does not have to be triggered by epilepsy.

  • If it is not epilepsy, it is a serious condition or condition of the brain that triggers the status epilepticus.

  • People in the study are often seriously ill when the disease occurs.

This is called comorbidity. Comorbidity is when a patient has several illnesses at the same time. If there is no life-threatening disease and the seizure is detected early, there are good chances of survival without brain damage.

A study of the Austrian city of Salzburg shows that the causes of the status epilepticus are often age-related diseases. As the population ages, more cases of status epilepticus are expected. However, this does not necessarily mean that the risk of suffering from it increases.


Fast treatment = lower risk of injury

Status epilepticus is stopped by seizure medications. Since the person with the status epilepticus is unconscious and has convulsions, the medication can not be taken in a normal way.

Instead, the drug is usually administered in aqueous solution either through the rectum or through the oral mucosa, depending on the nature of the drug.

Most commonly, midazolam or diazepam are used. Both drugs can be used for both children and adults. Alternatives can be phenytoin or fosphenytoin.

It is also common to administer oxygen through a mask to compensate for the lack of oxygen in the brain.

Status Epilepticus requires hospitalization.

"Time is brain," said Stephan Rüegg from the University Hospital Basel for his presentation at the "13th European Congress for Epileptology" in Vienna. His studies showed a clear association between time and brain damage.

The sooner treatment can begin, the better the chances of survival and the lower the risk of long-term consequences.
— Dr. Stephan Rüegg

An epilepsy alarm like Epi-Care mobile can make sure that the seizure is recognized quickly, and provides a head start in terms of vital minutes.


The best thing you can do is to prepare yourself. Our epilepsy alarms give you a head start.

It is important that carers or people with epilepsy know what to do, even in a stressful situation. Otherwise it can quickly lead to panic and confusion, which costs precious time. Make sure you create a plan before the a status epilepticus occurs. Practice the situation so everyone knows what to do. In order to be able to help quickly and consistently, it makes sense to share a list of precautions with the carer or relatives. A plan increases security for all involved.

Discuss the seizure treatment with your doctor and nurse to find the best solution for you.

The worst thing that can happen is that the seizure is not detected.

Danish Care Technology has developed the Epi-Care product line to ensure that epileptic seizures are detected. An effective epilepsy alarm helps relatives or carers maintain and stop the status epilepticus without having to personally monitor day and night and thereby limit the user’s freedom.


Younger men and older women are more likely to get status epilepticus

Status Epilepticus, despite its name, is nothing that only affects people with epilepsy. In fact, 36.1 people per 100,000 adults can expect to get the disease. Of these, 40% previously had an epileptic seizure.


First case of status epilepticus by gender and age

The data comes from the Austrian city of Salzburg in the period 2011-2015

The ILAE set the definition to 5 minutes in 2015. Previously, the official diagnosis was 30 minutes of continuous seizures or 30 minutes of seizures at short intervals. The renewal of the definition means that there are not many large studies using the current criteria yet.

The study” Epidemiology of status epilepticus in adults: A population-based study on incidence, causes, and outcomes” is based on the new definition.

The study was conducted over 5 years. The researchers have analyzed status epilepticus in the population of the city of Salzburg.

In the Salzburg study, epilepticus status occured to about 36.1 out of 100,000 persons per year.

In the period 2011-2015, there were 221 cases of status epilepticus. Of these, 90 people suffered from epileptic seizures in advance, being 40%.

The study from Salzburg also shows that there is a higher risk of status epilepticus when you are older and female.

At a younger age, men are the more endangered, but over time women fill the statistics as they grow older on average than men. They are particularly prone to status epilepticus without cramping.

The numbers are interpreted as meaning that older people are more susceptible to serious diseases and that these diseases cause the status epilepticus.

People without a history of epilepsy may have the status epilepticus due to heartbeat, infections, physical trauma such as acquired brain damage, poisoning, and metabolic disorders.


Epilepsy alarms