SUDEP

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Classification according to ICD-11
MH15 Sudden unexpected death in epilepsy
ICD-11 ( WHO version 2019)

SUDEP ( sudden unexpected death in epilepsy ) is a sudden, unexplained death in epilepsy with no evidence of relevant trauma or drowning , with or without evidence of a previous epileptic attack , but no evidence of a previous status epilepticus . People with epilepsy are at increased risk of dying suddenly and unexpectedly.

frequency

The risk of SUDEP is 50 to 100 in 100,000 people with epilepsy each year. This means that up to an average of 1 in 1,000 people with epilepsy will die of SUDEP over the course of a year. In children, the average risk is estimated to be around ten times lower (0.2 per thousand or 1 case in 5000 seizure children / year).

Overall, SUDEP is responsible for an average of 7 to 17% of premature deaths from epilepsy. In the case of easily treatable epilepsy, the risk is around 2%, but in the case of therapy-resistant epilepsy it is over 20%.

A request to the Federal Statistical Office brought the information that SUDEP is not listed in the death statistics in Germany. The reason given by the Federal Statistical Office is that no disease is known under the name SUDEP, since the ICD-10 has been mandatory for diagnoses since 2013 .

causes

It is believed that SUDEP deaths are due to effects of seizures on the autonomic nervous system . In the course of epileptic seizures, for example, there can be considerable changes in the heart rate , both in the form of very high heart rates ( tachycardia ) and in the form of slowdowns ( bradycardia ) up to cardiac arrest and disturbance of the breathing regulation. The direct influences of epileptic activity on the lungs (“neurogenic pulmonary edema”) may also play a role. Most patients die in their sleep.

Hazard factors

Research suggests that the following factors contribute to increasing the risk of developing SUDEP:

Risk reduction

Optimized therapy that completely prevents seizures is the only proven factor that reduces the risk of SUDEP. The following can also contribute:

  • Follow your doctor's instructions for taking your medication
  • In particular, taking the medication regularly
  • Adherence to a healthy lifestyle, avoidance of alcohol
  • Sleep in a back position and if possible not alone

If treatment with anti-epileptic drugs is unsuccessful, the search for another treatment path,

  • for example by a surgical measure or
  • the implantation of a vagus nerve stimulator .
  • Inpatient observation and examination in epilepsy centers. Occasionally, newer anti-epileptic drugs that have not yet been approved on the market can also be successfully tested there.
  • Not suddenly stopping medication as this can lead to dangerous seizures.

Immediate triggers

All of the deceased had suffered an epileptic seizure (usually a generalized tonic-clonic seizure) either within a few minutes before or at the same time. It was also found that there is a connection between cardiac arrhythmias and seizure frequency.

Surgery

Studies support the assumption that removing an epileptogenic area lowers or even normalizes the risk of SUDEP. It has been shown that after epilepsy surgery on the temporal lobe , the heart improved independently.

However, many questions remain unanswered, since the studies were carried out with different methods and viewpoints and so no absolutely common results could be achieved. This leaves the comparison of patient data between those who were suitable for epilepsy surgery and those who are unsuitable and continue to receive medication. It can be assumed, however, that suitable persons for the procedure have a lower risk of SUDEP from the outset.

Pharmacological influences

Virtually no specific anti-epileptic drug has been associated with an increased risk of SUDEP. There is more risk when taking more than one preparation. However, it could not be clarified whether the medication or the usually difficult to treat epilepsy is responsible.

literature

  • Hansjörg Schneble: Life expectancy, causes of death, sudden death. In: Deutsche Gesellschaft für Epileptologie (Ed.): Information sheet June 122 , 2013. On IZepilepsie.de ( PDF ; 49 kB), accessed on September 29, 2019.
  • Günter Krämer : The great TRIAS manual on epilepsy. 3rd edition, Trias, Stuttgart 2005, ISBN 3-8304-3129-5 .

Individual evidence

  1. ↑ Inquiry to the Federal Statistical Office. April 21, 2013, accessed April 30, 2013 .