Sudden Unexplained Death in Epilepsy
by Ann Farrell
SUDEP – Sudden Unexplained Death in Epilepsy – has been known to the medical profession for over 300 years but has continued to be misunderstood. The good news is that the chance of SUDEP happening to a loved one is remote – less that one in 1,000 annually.
According to the National Sentinel Clinical Audit of Epilepsy-Related Death "SUDEP is the sudden, unexpected , witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence of a seizure and excluding documented Status Epilepticus, in which post-mortem examination does not reveal a toxicological or anatomical cause of death."
Quite a mouthful, and likely not much comfort to those dealing with such a loss as I was eight years ago when I found my 32-year-old daughter, Judy, dead in her Hamilton apartment. She fit the profile for SUDEP's risk factors: a young adult; poor seizure control; history of generalized tonic-clonic seizures; history of seizures for a period of more than one year; three or more seizures a year; seizures in sleep.
While the risks associated with SUDEP aren't always definitive or even something that the person with epilepsy can alter it is thought that optimal seizure control can be preventative. Once epilepsy is diagnosed treatment should start promptly, medication should be taken regularly and sudden withdrawals should be avoided. Caregivers should stay with a person who has a seizure for 20 minutes after it ceases to ensure normal breathing has returned, and because SUDEP often occurs at night, those who have frequent nocturnal seizures may benefit from night-time monitoring.
Not all doctors and neurologists agree that patients and their families should be informed about SUDEP due to the relatively low percentage of people who experience it, and because many of the risk factors cannot be controlled. This is a point of view which I, and others who have lost someone to SUDEP, disagree. The information may be disturbing, but for those who have to deal with such a death the sense of betrayal is far worse; especially as so many of us had been told that epilepsy is not fatal except in cases of accidents.
With the support of local epilepsy associations I conduct a support group, SASA (SUDEP Awareness and Support Association), to provide information and contacts to the newly-bereaved. SASA can be reached through Epilepsy Bereaved at www.sudep.org; Epilepsy Ontario – www.epilepsyontario.org; Epilepsy Toronto – www.epilepsytoronto.org. You can also contact me via email at peace2u@axxent.ca or Donna Bernreuther, founder of the David Rouzault Memorial Foundation at dbernreuther@shaw.ca.
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