SUDEP refers to the unexpected death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy. It is not a condition or disease, but rather the category to which these types of unexplained deaths are assigned.
What is SUDEP?
What causes SUDEP?
What are the chances of dying from SUDEP?
Could SUDEP happen to me?
What can I do to lower the risk of SUDEP?
Should people with epilepsy live differently because of SUDEP?
Do doctors have a role to play with regard to SUDEP?
Some victims of sudden death syndrome are found to have sub-therapeutic blood levels of anti-epileptic drugs. It is prudent to try to predict those who might be most susceptible to SUDEP, particularly young people aged 20 to 40 with poorly controlled tonic-clonic seizures. It may be beneficial for these patients to be monitored by their physician with increased frequency during this period and compliance assessed more frequently.
If a SUDEP death should occur, we believe it is important that it be formally identified as SUDEP. In addition to information, families bereaved by SUDEP need to be offered a compassionate ear and grief counselling.