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Canadian League Against Epilepsy


Sudden unexpected death in epilepsy (SUDEP) is the leading cause of death in people with chronic uncontrolled epilepsy. This usually manifests as finding someone with a history of epilepsy passing away in bed, often with evidence of a prior seizure such as a bitten tongue and blood on the pillow, or urinary incontinence. The frequency of SUDEP varies substantially, ranging from 0.09 to 2.3 per 1000 patients per year.

Risk factors for SUDEP include

  •          Poorly controlled generalized tonic-clonic seizures
  •          Being on more than one antiepileptic medication
  •          Not taking antiepileptic medication regularly
  •          Low blood levels of antiepileptic drug
  •          Living alone

The causes of SUDEP are still not understood. SUDEP usually follows a tonic-clonic seizure, but it is unclear what predisposes a particular individual with epilepsy to SUDEP. The dominant thinking is that SUDEP is ultimately caused by failure to breathe or by a fatal heart problem, sometimes accompanied a generalized shutdown of brain electrical activity. Currently, there is active research on SUDEP including studies focusing on the place in the brain thought to be important for SUDEP (the brainstem), and the development of new treatments to prevent SUDEP.

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