SUDEP (Sudden Unexplained Death in Epilepsy) is not rare. These individuals with epilepsy are found dead without evidence of having had an associated convulsion, i.e., there is no sign of incontinence or tongue biting or thrashing.
New studies reveal sudden death is more common, dangerously more common, than previously thought. One-third of people with epilepsy continue to have some seizures despite adequate treatment with antiseizure medications. These individuals’ epilepsy is referred to as “poorly controlled” or “uncontrolled” epilepsy. Their risk each year of SUDEP is 1/150. The risk is particularly high in those whose uncontrolled seizures are the tonic-clonic type. Among epilepsy patients whose seizures are well-controlled, i.e., no seizures while on treatment have a risk of SUDEP incidence of 1/1000. 1
What should you do to lessen your risk of SUDEP? Take your medications as prescribed to hopefully decrease the likelihood of having a seizure as it’s more common among those with poorly controlled tonic-clinicepilepsy. Discuss SUDEP with your doctor. You may have to bring up the subject as many physicians are hesitant to discuss possible “bad” news.
For more information about SUDEP I invite you to read my blogs at LanceFogan.com, titled: #13: Sudden Unexpected Death During Seizures; #30: Should Doctors Discuss SUDEP with Epilepsy Patients? #57: Sleeping on Your Stomach Increases Risk of SUDEP; and #68: Epilepsy, Risks to a Long Life and Mortality.
1) LJ Hirsch, EJ Donner, EL So, et. al. Abbreviated report of the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011: 76 1932-1938
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.