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.

Status epilepticus is a lengthy and dangerous seizure. All types of epileptic seizures can evolve into status epilepticus. However, it rarely happens. This article is about generalised tonic-clonic status epilepticus, which is the most common type. We have written in depth about generalised tonic-clonic seizures here.

Status epilepticus is when a seizure does not stop, or one seizure follows another without the person recovering in between. If this goes on for 5 minutes or more it is called status epilepticus. This can continue for more than 30 minutes.

In 95 % of all seizures, a tonic-clonic seizure ends by itself within a period of 5 minutes. It can also be difficult to breathe during a ‘regular’ seizure. But, because the seizure only last for a short time, the lack of oxygen causes no permanent damage. In contrast, the longer lasting status epilepticus seizure bears a significant risk of brain damage and death. You don’t need to have epilepsy for status epilepticus to happen. The name simply means ‘lengthy cramp’.

How dangerous is status epilepticus?

The Danish Health Authority’s report “Review of the effort toward people with epilepsy” (in Danish) shows that there is a high mortality rate associated with status epilepticus.

  • It concludes that among 41 adults hospitalised for the first time due to status epilepticus, about one in four patients died prior to discharge.

  • The mortality rate within two years was close to 50 %.

  • A newer meta study shows that about 15 % of all people with status epilepticus in the included studies dies.

The danger is closely related to the time until status epilepticus is discovered and stopped with medication. The longer the seizure, the greater the lack of oxygen and resulting brain damage. Not only people with epilepsy die from status epilepticus. A study of people without epilepsy on the French island Réunion shows that it hits about 11 out of 100,000 people. Alcohol, cerebral haemorrhage and poisoning are common causes. Older men were most at risk with a mortality rate of 18 %.

Attention and speed are the best weapons against status epilepticus

During status epilepticus, the seizure inhibits your breathing. The longer you cannot breathe the greater the risk of serious injury. Therefore, it is imperative that the seizure is quickly detected. It is important to detect when a person suffers a seizure. For people who have experienced status epilepticus before, this is particularly important.

The worst that can happen is that the seizure is not detected. This means that there is a need for monitoring. This is often a cause of the dilemma of how much monitoring is acceptable compared to the risk of status epilepticus.

We, at Danish Care Technology, have developed our Epi-Care series to ensure that epileptic seizures are detected. An effective epilepsy alarm means that relatives and carers can stop status epilepticus without having to remain at the person’s side or limiting the personal freedom of people with epilepsy. As the Epi-Care epilepsy alarm in extreme cases can save lives, you might be able to get equipment free of charge or get help with the cost. Read more about your options here.

Treating Status Epilepticus

Status epilepticus is stopped by administering anti-seizure medication. The person with status epilepticus is typically unconscious and suffering convulsions, therefore, the medication cannot be administered normally. Instead, the medicine is often administered as an aqueous solution through the rectum or through the mucous membranes in the mouth, depending on the type of medicine. The type of medication typically administered is midazolam or diazepam. Either medication is usable for both adults and children. Alternative medications may be phenytoin or fosphenytoin. It is essential that nearby people can correctly administer the necessary medication and are prepared to act in a safe and appropriate manner. Also, it is very important that relatives to people with epilepsy know what to do, even in an urgent situation.

It varies from person to person what type of medication is effective and in what dose. The dose depends on body weight and the person’s tolerance to the type of medication. Too small a dose doesn’t work as intended and too large a dose can prove dangerous by e.g. inhibiting breathing. To be able to help quickly and consistently, it is practical to have a list of precautions that is shared with carers and relatives. A plan increases the security for all involved. Discuss treatment of seizures with your GP and your carers to find the best solution for yourself.