After sudden unexpected death in epilepsy: Lessons learned and the road forward

Abstract

SUMMARYThe devastating effects of sudden unexpected death in epilepsy (SUDEP) can be difficult to navigate, even for experienced clinicians. Mounting evidence supports full disclosure of the risks of epilepsy to those affected and their caregivers, and recommendations from regulatory and professional groups encourage the same. Following a death, families are faced with tragedy, guilt, and sometimes anger. Clinicians are often called upon to provide information and support. The development of a comprehensive approach to SUDEP education requires careful consideration of the people living with epilepsy, facts about SUDEP and known risk factors, as well as experiences of families and care providers. In this article, we share the experiences of those working in SUDEP education and epilepsy care, including the voluntary sector. We explore the experience of bereaved families and clinicians, derive lessons from published research, highlight areas where more research is needed, and report on preliminary data from a nationwide study from France.

From unwitnessed fatality to witnessed rescue: Nonpharmacologic interventions in sudden unexpected death in epilepsy

“…Although simple interventions such as tactile and auditory stimulation, patient repositioning into the recovery position, and removing potentially hazardous objects from the environment are likely to be beneficial in the home setting, the routine use of special pillows or more advanced interventions, such as home oxygen or portable defibrillators, remains of unproven benefit. Patient/carer information and education are integral to the assessment and success of community‐based interventions …”

Who to target in sudden unexpected death in epilepsy prevention and how? Risk factors, biomarkers, and intervention study designs

“…An emergent question is whether ECG and EEG characteristics recorded in the interictal or periictal period indicate an increased risk of SUDEP. To address this, it is helpful to consider the pathomechanisms involved in SUDEP discussed in more detail in this supplement . With a large spectrum of epilepsy‐related cardiorespiratory alterations, SUDEP is likely to have multiple causes.…”

“…A French network (Réseau Sentinelle Mortalité Epilepsie – RSME) recording causes and circumstances of death related to epilepsy in France was established in 2010 and also aimed to evaluate expectations and needs of bereaved families and create a national database for future research (http://www.lfce.fr/Le-Reseau-Sentinelle-Mortalite-Epilepsie-RSME_a46.html). In 2014, SUDEP Action in the United Kingdom (previously Epilepsy Bereaved) launched a register of self‐reported epilepsy deaths (https://epilepsydeathsregister.org) with a focus on SUDEP. An intervention could also be evaluated in a community with a stable SUDEP rate over time, even if not all SUDEP deaths are identified if the method for SUDEP ascertainment remains the same.…”

A Systematic Search and Mapping Review of Studies on Intracerebral Microdialysis of Amino Acids, and Systematized Review of Studies on Circadian Rhythms

“…Amino acids have been implied in the pathology of several neuropsychological disorders, including addiction to various compounds [567], ischaemia [89], depression [10], Tourette’s syndrome [11], Parkinson’s disease [12], and (neuropathic) pain [13]. Histamine and the amino acids asparagine, aspartate, GABA, glutamate, glutamine, glycine, proline and taurine can be measured in a single high-pressure liquid chromatography (HPLC) run.…”