I had never heard of SUDEP, or Sudden Unexplained Death in Epilepsy, until researching epilepsy
for an article I was writing. As I read about SUDEP, I wondered if it could happen to me. The risk of sudden death is 24 times more likely in a person with epilepsy than the general population. Since most SUDEP victims are found in bed lying on their stomachs, I slept on my back last night, just in case.
As its name clearly states SUDEP is a sudden death that afflicts patients with epilepsy who die unexpectedly while in a reasonable state of health. The SUDEP death occurs under normal circumstances and was not the direct result of either a seizure or status epilepticus. Further, a cause of death cannot be determined during autopsy. SUDEP has been recognized since 1868 but not much attention has been given to it.
While few studies have been done on the incidence of SUDEP, the consensus is that SUDEP accounts for between 8-17% of deaths in people with epilepsy. Studies show that the incidence of SUPED in young children is very low.
Patient Risk Factors for SUDEP:
Ã¢Â?Â¢ Age – 25-35 year olds more commonly die from SUDEP
Ã¢Â?Â¢ Gender – Males succumb to SUPED at a ratio of 7:4
Ã¢Â?Â¢ Race – African-Americans are more at risk for SUDEP
Ã¢Â?Â¢ Development – Developmentally delayed are higher risk for SUDEP
Ã¢Â?Â¢ Excessive alcohol consumption
Seizure Risk Factors for SUDEP:
Ã¢Â?Â¢ Symptomatic epilepsy
Ã¢Â?Â¢ Generalized Tonic-Clonic
Ã¢Â?Â¢ Younger age at time of seizure onset
Ã¢Â?Â¢ Having seizure disorder for over ten years
Ã¢Â?Â¢ Having a high number of seizures
Ã¢Â?Â¢ Having recent seizures
Treatment Risk Factors for SUDEP:
Ã¢Â?Â¢ Recent change in treatment
Ã¢Â?Â¢ Low levels (subtheraputic) of anti-epileptic medication
Ã¢Â?Â¢ Higher number of medications
Ã¢Â?Â¢ Higher levels of carbamazepine, an anti-epileptic medication
In searching for information about SUDEP, I found out that Kung Fu artist, Bruce Lee is rumored to have died with SUDEP. In fact, the death toll from SUDEP is thought to be higher than estimated due to the undiagnosed epileptics out there as well as the benign nature of it. Many death certificates may list suffocation, cardiac arrest and other causes of death.
What to do about SUDEP? More education is needed from doctors to their patients. I’ve been living with epilepsy for over 30 years and just now heard of it. I suppose a campaign similar to the “Back to Sleep” campaign to prevent Sudden Infant Death Syndrome might help. In the meantime, since you can’t control your age, gender or race, work on the things you can control such as taking medications, curbing alcohol consumption, talking to your doctor and researching this syndrome further. And for good measure, sleep on your back.