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

SUDEP

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.

People with epilepsy: Tell us about rare risk of death

People with epilepsy want their health care providers to tell them about a rare risk of death associated with the disorder, according to a preliminary study released today that will be presented at the American Academy of Neurology’s 69th Annual Meeting in Boston, April 22 to 28, 2017.

RAISING SUDEP AWARENESS IN PEDIATRIC EPILEPSY

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...

WHAT ABOUT SUDEP

About Epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy) When a person has two unprovoked seizures or one unprovoked seizure with the likelihood of more, they are considered to have epilepsy. Epilepsy affects 3 million people in the U.S. and 65 million worldwide. This year, another 150,000 people will be diagnosed with epilepsy. Because available treatments do not completely control their seizures, 3 out of 10 people with epilepsy continue to experience uncontrolled seizures while many more experience less than optimal seizure control. SUDEP is the leading epilepsy-related cause of death; each year in the U.S., SUDEP kills more than 2,750 people with epilepsy.

Preventing Epilepsy Deaths

Seizures aren’t the only cause for concern. Fortunately, most children experiencing epilepsy grow up to live long and fruitful lives. But every parent naturally wonders whether their beloved child with seizures could pass away prematurely. In today’s world, a quick Internet search serves up plenty of information about SUDEP, or sudden unexpected death in epilepsy. While the risk of  SUDEP is lower in children than adults, it remains one of the greatest concerns for any parent. What can we do together to minimize this risk and manage the concern?

Many Epilepsy Deaths May Be Prevented with Better Education

Research shows that people with epilepsy have a 27-fold greater risk of sudden death compared to those without the disorder. Many of these deaths could be prevented, however, according to some of the nation’s leading epilepsy experts writing in the journal Neurology. The experts assert that the death toll could be reduced through greater identification of epilepsy as a cause of death and by educating the public more effectively about the disease’s life-threatening dangers. They further call for a broad public health campaign and improved cause-of-death reporting.

Genetic Variants Associated with Sudden Unexpected Death in Epilepsy

Whole exome sequencing revealed that gene variants related to cardiac sudden death, long QT syndrome, and focal epilepsy were more prevalent in people who had died from sudden unexpected death in epilepsy (SUDEP) than in a cohort of control patients, Australian investigators reported on Monday at the annual meeting of the American Epilepsy Society (AES) in Philadelphia. The findings implicate cardiac rhythm defects in mortality in a percentage of SUDEP cases and suggest that for some patients, SUDEP could be prevented with appropriate drug therapy, Douglas Crompton, MD, PhD, a neurologist at the University of Melbourne, reported at the meeting.

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...

Gene May Boost Death Risk for People With Mild Epilepsy

Researchers say they’ve identified a gene mutation that might increase the risk of sudden death in people with mild epilepsy. The researchers studied a four-generation family with nine members who had epilepsy caused by a mutation of the DEPDC5 gene.  This form of epilepsy is considered mild. But, two of the family members suffered what is known as sudden unexpected death in epilepsy (SUDEP), which is statistically significant for the small number of people in the study, according to the researchers in the Adult Genetic Epilepsy Program of the Krembil Neuroscience Center in Toronto.

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.

Lost Password

Register