As you sit reading this column, there is a plethora of electrical activity going on in your head, hopefully! Our brains function by exchanging trillions of electrical signals and chemical transmitters. If a portion of the brain begins to behave aberrantly and sends unusual amounts of signals, the synchrony is disrupted - being the control center of the body all sorts of problems can result. These range from a full activation of your motor centers, causing generalized seizures and unconsciousness to more subtle things such as blinking, emotional changes or strange sensations. The word “epilepsy” still rings with stigma, and I continue to encounter patients who are embarrassed for fear of societal repercussions. Why? Because they continue to occur.
The recent tragedy that affected the Travolta family is a case in point. John Travolta's teenage son Jett was discovered deceased during a family vacation. Much controversy surrounds this grieving family, since it is rumored that Jett suffered a generalized seizure. The words epilepsy and autism have been bantered around, but the question of what truly happened to Jett Travolta may not be openly answered.
Some good can arise out of a tragedy if it can help prevent a similar tragedy.
I was in Holland with my good friend Dr. Peter Carlen in August 2008 to attend a conference on epilepsy. The European position on generalized epilepsy is that most cases can be treated or controlled, some even speak of cures, but many people afflicted with epilepsy have a shorter life expectancy than average. SUDEP may be one reason why. Many of my colleagues are not aware of SUDEP, also known as Sudden Unexplained sDeath in Epilepsy.
SUDEP refers to the death of someone who is known to have epilepsy, but in which no obvious link to the disease can be found at the time of death. The exact mechanism is not yet known. Some scientists postulate that it may be due to an inherent metabolic defect or receptor change. There are some features seem to be found more often, in cases which have been labelled as SUDEP. These include: people who suffer generalized seizures in their sleep, require frequent adjustments of medication for control, those who choose to not take and monitor their medication and perhaps young males.
Managing someone who is having a generalized seizure has not changed over the years, and should include supportive measures to ensure that the victim can breathe and move air into their lungs. There are a few witnessed cases of SUDEP. Most victims do have a seizure, but go on to succumb afterwards and not during, which is a major difference and point of contention. People afflicted with generalize epilepsy should be receiving diligent ongoing monitoring. Longer periods of observation after a generalized seizure are now in order, paying particular care to any difficulties in breathing.
More information and support can be found at the Toronto Epilepsy Association web site at www.epilepsytoronto.org.
● Sudden Unexpected Death in Epilepsy from Wikipedia, the free encyclopedia.
● Sudden Unexplained Death in Epilepsy by Michael R. Sperling, M.D., Department of Neurology, Thomas Jefferson University, Philadelphia, Pennsylvania.
● Sudden Unexplained Death in Epilepsy by Jocelyn Maminta, WTNH.
● Sudden Unexplained Death in Epilepsy (SUDEP) from NYU Langone Medical Center.
● Pacemakers Could Cut Sudden Death in Epilepsy - Potentially Deadly Heart Rhythms Seen During Seizures by Miranda Hitti, WebMD Health News.
● Effects of Seizures on Autonomic and Cardiovascular Function by Orrin Devinsky, M.D., Comprehensive Epilepsy Center, New York University Medical Center.
● Sudden Unexpected Death in Epilepsy from eMedicine, by Shahin Nouri, MD, and Marshall Balish, MD, PhD.
● Epilepsy & the Facts - in PDF, 2 pages. All About Epilepsy Fact Sheet from Epilepsy Toronto.