The Dilemma of Epileptic Sudep

In their editorial in Epilepsia, Elizabeth Donner, MD, Director of the SickKids Comprehensive Epilepsy Program, Toronto, Canada, and Jeffrey Buchhalter, MD, Director of the Children’s Comprehensive Epilepsy Centre, Alberta Children’s Hospital, Alberta, Canada, recommended that clinicians discuss the possibility of SUDEP with all of their patients.¹ The authors cited studies indicating that parents of children with epilepsy want to be informed of possible complications, such as SUDEP, and that most parents would like to learn of these at the time of their child’s diagnosis.
The advantages of such a discussion include engaging patients in their own care and helping them avoid misinformation about SUDEP. Although such a discussion may engender additional anxiety, the authors observed that because patients are likely to seek out SUDEP information on the Internet that may be inaccurate or misleading, clinicians initiating the discussion of such an important and sensitive topic is preferable.
However, because SUDEP will not develop in the vast majority of patients with epilepsy, it is unclear whether all patients with epilepsy should be educated on this risk, and if they are, whether the first visit is the appropriate time. In 1 survey, patients admitted to fear/anxiety/concern (40.5%), indifference (27.4%), and confusion (19.1%) after learning of SUDEP.⁸ Not all patients wanted to be told of the risk, and some wanted to be told only if they were at high risk.⁸ The editors of Epilepsia have posted a poll on the subject for readers to express their own views.
Andrew Wilner, M.D., Neurology Times

Doctors who treat patients presenting with dread diseases like cancer face a difficult part of their profession in speaking frankly, for fear of frightening their patients so profoundly that it will affect their frail health even more. Often information of a nature deemed to be too fearsome to impart to the sufferer, is relayed instead to a close and intimate relative, leaving it to them to decide whether to share with the patient.

There's a dilemma, all right; by failing to inform the patient directly, can the patient become an informed 'partner' in whatever protocol must be medically undertaken to ease their condition? Granted, there are some patients who would prefer not to know the grim details of their prognosis and if the medical practitioner reads the signals loud and clear perhaps it's best to convey the information through someone the patient trusts.

Yet withholding vital information in many instances can represent a deficit not in the patient's favour. As in the instance, for example, of those suffering from epilepsy not being informed of the potential through their condition of a sudden, not fully understood calamity when sudden death in epilepsy occurs. Someone with epilepsy may undergo a neurological episode leading to death, and this is called Sudep.

SUDEP Aware (Canada) www.sudepaware.org
SUDEP Action (UK) www.sudep.org
SUDEP – Epilepsy Foundation of America www.epilepsy.com/learn/impact/mortality/sudep

In the United States the government has launched research in an attempt to understand what occurs to create the conditions favourable to sudden unexpected death in epilepsy. The syndrome is quite simply mysterious at the present time and cannot be foreseen. But preventing seizures as much as possible is viewed as an interim prevention protocol until such time as more is known.

An individual with epilepsy retires for the night, and is found the following morning, no longer alive. Sometimes evidence is clear that a seizure had occurred at some juncture during the night, during sleep, validating the belief that medications preventing seizures represents the best possible solution to preventing the onset of Sudep.

Sudden unexpected death in epilepsy, according to neurologists comes in second to stroke as a cause of death relating to a neurological disorder, killing an estimated 2,600 people annually in the U.S. alone, with the real figure conjectured to be higher, representing one in 1,000 people with epilepsy. For those with medication-uncontrolled epilepsy the fatality rate is one in 150.

Someone forewarned is forearmed, understanding the need to take medication regularly to avoid seizures; that avoidance helps to prevent Sudep, yet many neurologists remain loathe to burden their patients with fear and trepidation that they are certain to impose with the knowledge that Sudep remains a high risk for epileptics. Self-help groups, on the other hand, who provide people with epilepsy with support, do include details about Sudep to ensure that people with epilepsy are aware.

The National Institute of Neurological Disorders and Stroke has initiated a major research program on the phenomena; its investigators appear convinced that the electrical storm in the brain occurring during a seizure where someone loses consciousness and convulses has the potential to stop the heart, or interfere with brain activity, and stop it entirely.

Dr. Orin Devinsky, director of the epilepsy centre at New York University Langone Medical Center feels that knowledge of the syndrome can lead patients to collaborate with their doctors to ensure their seizures are kept under control, since death occurs in the wake of a seizure.

It is hard to know when or if SUDEP is going to occur but there are things that you can do to minimize your risk. Work to minimize the number of seizures you experience which means:

• Sticking to your prescribed treatment (medications, diets etc.) from your doctor
• Take all medications on time, in the correct dosages
• Let your doctor know of any troublesome side effects from medications as soon as possible
• Do not change or abruptly stop taking your medications
• Work to identify some possible seizure triggers you may have so you can avoid them
• Make sure to keep and attend your appointments with your healthcare team
• Be honest about the number of seizures you are experiencing or if you are having difficulties with your medications
• Discuss other types of epilepsy treatments with your neurologist if necessary
• Do your best to lead a healthy, active lifestyle which includes having a good diet, getting enough rest each night by keeping a regular sleep routine and getting physical exercise as often as possible
• Make sure to educate your family and friends about seizure first aid and what they can do to help if a seizure happens