Welcome to EpilepsyU.com a social network dedicated to the epilepsy community


Brain MRI May Flag SUDEP Risk

MRI of the brain can detect potentially life-threatening brainstem damage in patients with epilepsy, suggesting the test could be used as a biomarker to identify those at risk for sudden unexpected death in epilepsy (SUDEP), new research shows.   “When we looked at the brain stem of people who died from SUDEP, we saw that they had volume loss in certain regions of the brain stem, and those regions are involved in autonomic control, so control of breathing and heart beats, et cetera”, lead author, Susanne Mueller, MD, associate professor, radiology and biomedical imaging, University of California, San Francisco (UCSF), told Medscape Medical News.

Sudden Deaths in Epilepsy May be Cardiac Disease

It is a little appreciated fact that about 10-20 percent of individuals who are told they have a seizure disorder and who are taking anticonvulsants actually never had epilepsy. Rather, the cause of their syncope was an intermittent cardiovascular event such as a vasovagal episode or an arrhythmia associated with cerebral hypoperfusion and motor movements interpreted as a classic neurogenic seizure. It may take tilt table testing and prolonged outpatient ECG monitoring to unravel the true scenario. This enigma is one reason the emergency clinician may encounter patients who seize despite the use of anticonvulsants. They just never had epilepsy. Several cardiac conditions can cause seizures, and this etiology may account for the observation that patients with seizures have a higher rate of ...

New Guideline Published on Uncommon Risk of Death in Epilepsy American Academy of Neurology

There is an uncommon risk of death that people with epilepsy and their loved ones may not know about. The risk is called sudden unexpected death in epilepsy, or SUDEP. Now the American Academy of Neurology (AAN) and the American Epilepsy Society have co-developed a new guideline on SUDEP, published in the April 24, 2017, online issue of Neurology®, the medical journal of the American Academy of Neurology, and presented at the 69th AAN Annual Meeting in Boston, April 22 to 28, 2017. The guideline is endorsed by the International Child Neurology Association. SUDEP is when someone with epilepsy who is otherwise healthy dies suddenly with no known cause.


This article appears in the AAP News and Journals Gateway Increasing Awareness of Sudden Death in Pediatric Epilepsy Together Gardiner Lapham, William Davis Gaillard, Joanna Sexter, Madison M. Berl The death of any child is tragic. When the death is sudden and unexpected, it can seem especially incomprehensible. Henry was 4 years old when he died only a few weeks after his epilepsy diagnosis; his parents were devastated and never knew that death could occur; no physician had discussed the possibility with them. Henry was an otherwise healthy child, had a history of febrile seizures, and died in his sleep before his epilepsy workup was complete and before his medication was likely therapeutic. Since Henry’s death 8 years ago, together and independently, Henry’s parents, pediatrician, and ne...

SUDEP RESEARCH: Study: Blackouts, near drownings linked to sudden death risk

The annual congress of the South African Heart Association is being held in Rustenburg from Oct. 25-28, 2015. Experts from the European Society of Cardiology (ESC) will present a special programme. Professor Brink said: “LQTS is a cardiac disorder associated with blackouts (syncope). It is a treatable cause of sudden death but unfortunately blackouts, being common and most often not serious, are often ignored and the small group with serious events are then missed. When presenting to medical services the underlying cause may also be misdiagnosed.” Numerous patients with LQTS in South Africa share the same causal KCNQ1 A341V mutation which can all be traced to a common founder couple of Dutch descent in the early 18th century. The current study was set up in the early 1990s to d...


What is sudden unexpected death in epilepsy (SUDEP)? Currently, the accepted definition of SUDEP is the sudden unexpected witnessed or unwitnessed, non-traumatic and non-drowning death in people with epilepsy, with or without evidence of a seizure. It doesn’t necessarily have to be in the known context of a seizure, excluding documented status epilepticus, where people have seizure after seizure. Typically, what happens is that someone who’s known to have epilepsy is found to have died without any obvious explanation as to why. Even a post-mortem examination doesn’t reveal a structural or toxicological cause of death. It may or may not be known whether a seizure had occurred and no other cause of death has been identified.

Iowa researchers gain important insight into sudden unexpected death in epilepsy

Sudden unexpected death in epilepsy (SUDEP) is becoming increasingly recognized as a very real and devastating problem in which impaired breathing is thought to play a critical role. Researchers believe breathing may be impaired during and after seizures, without the patient’s knowledge. By using electrical stimulation to activate the amygdala, a group of University of Iowa researchers has identified areas of the human brain in which breathing is controlled and, in some cases, impaired, providing an important insight into SUDEP.

Seizure Frequency and Number of AEDs Play Role in Risk Factors for SUDEP

SUDEP is the most common “direct epilepsy-related” cause of death in persons with epilepsy. While the risk for is still relatively low for all patients, our understanding of SUDEP is also relatively low. Researchers in Korea recently conducted and published a study that investigates clinical variables in correlation with SUDEP in order to identify risk factors. Twenty-six SUDEP cases and 78 controls were included in the study. 

Brain ‘Tsunami’ May be Hidden Cause of SUDEP

Depolarizing wave may trigger sudden death in epilepsy A slow, depolarizing electrical wave – sometimes called a “brain tsunami” – may be the hidden cause of sudden unexpected death in epilepsy, a disorder that kills as many as 4,000 people in the United States each year, said researchers from Baylor College of Medicine in a report that appears in the journal Science Translational Medicine. While most individuals with epilepsy are not at risk of this catastrophic event, some genes linked to seizures and perturbations of the heart beat have been found to be risk factors. All seizures are accompanied by changes in heart rate and breathing. In the majority of cases, these recover as soon as the seizure ends. “What remains a secret is why some individuals, who may live well into young adulthoo...

SUDEP: Sleeping Position Linked to Risk of SUDEP

Sleeping on your stomach may heighten your risk of sudden death if you have epilepsy, new research suggests. Sudden, unexpected death in epilepsy occurs when an otherwise healthy person dies and “the autopsy shows no clear structural or toxicological cause of death,” said Dr. Daniel Friedman, assistant professor of neurology at NYU Langone Medical Center in New York City. This is a rare occurrence, and the study doesn’t establish a direct cause-and-effect relationship between sleeping position and sudden death. Still, based on the findings, people with epilepsy should not sleep in a prone (chest down) position, said study leader Dr. James Tao, an associate professor of neurology at the University of Chicago. “We found that prone sleeping is a significant risk for su...

Understanding The Brain and Heart Connection, Related to Epilepsy Mortality

Understanding the connection between the brain and the heart and the possible malfunction of cells and mechanisms in the connection may lead to better understanding and prevention of SUDEP and other cardiac symptoms related to epilepsy. ANN ARBOR, Mich. — For children and adults with epilepsy, the possibility of dying suddenly and without warning looms in the background all the time – yet scientists and doctors still don’t know why it occurs. Now, researchers from theUniversity of Michigan Medical School and colleagues around the nation will try to get to the heart of this mystery, and perhaps find new ways to spot those most at risk. A new $3.3 million grant will help fuel the U-M work.

SUDEP: Research Initiative Receives Grant for Furthering Understanding

Projects build a virtual center for research on death associated with epilepsy Nine groups of scientists will receive funding totaling $5.9 million in 2014 to work together on increasing the understanding of sudden unexpected death in epilepsy (SUDEP), the leading cause of death from epilepsy. The consortium becomes the second Center Without Walls, an initiative to speed the pace of research on difficult problems in epilepsy by promoting collaborative research. The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health, funds this initiative. “We hope that by encouraging scientists with expertise in a variety of areas to join forces in the Centers Without Walls initiative for SUDEP research, we may learn how to prevent the tragic de...

Lost Password