Wednesday, March 25, 2020

Blog #116: YOUR EPILEPSY AND YOUR SURVIVAL

 
Epilepsy affects 65 million people worldwide and over 3 million Americans. It places a major burden in seizure-related disability, mortality, co-morbidities, stigma, and costs. The lives of most people with epilepsy continue to be adversely affected by gaps in knowledge, diagnosis, treatment, advocacy, education, legislation, and research.
Epilepsy is associated with causes of death other than seizures, e.g., drowning, traffic accidents, accidents in the home, co-morbidities and suicide.
Life expectancy is reduced approximately two years when the cause of the epilepsy is unknown (idiopathic). Life expectancy is reduced even more—up to 10 years—when there are identifiable diseases such as brain tumors, infections, scars from strokes and scars from brain traumas. In a study conducted from 2005-2010, on 7,461 epilepsy patients, 29% died over that 5-year study period. For perspective, this death rate was five times higher in the epilepsy population than in the control population. 1
Recent reports from the United States and from the United Kingdom indicate epilepsy mortality may be rising. Possible explanations for this trend include: increase in Alzheimer’s as a risk for epilepsy; increased survival of patients with other neurological disorders, and inadequate prevention of otherwise preventable conditions such as heart disease, stroke, illegal-drug usage and alcohol. In their 2016 study, Greenlund et al reported a 47% increase in mortality in the US between 2005-2014 and a 33% increase in the UK between 2003-2014. However, these results are confounded by an increase in epilepsy prevalence worldwide.2  Furthermore, risk factors for stroke and ischemic heart disease are increased by use of antiepileptic drugs.3,4 
 Today, people who have epilepsy could contract COVID-19 an develop a severe illness.To minimize this risk follow CDC recommendations, i.e. frequent hand-washing, staying at least 6 feet away from others, etc. High fevers can trigger seizures.
SUDEP (sudden unexplained death in epilepsy) is another cause of death. SUDEP is more likely to occur when tonic-clonic seizures are poorly controlled. SUDEP affects 1 in 4500 children per year and 1 in 1000 adults per year. Risk factors for SUDEP include duration of epilepsy for over 30 years, experiencing more than 3 convulsions per year, using more than 2 antiepileptic drugs simultaneously, and an IQ below 70. Good seizure-control is strongly associated with decreased SUDEP risk. Factors that could minimize SUDEP occurrence include taking your medications as prescribed, getting adequate sleep, using “Baby Monitors” close to the bed to detect sounds of a convulsion for rescue attempts and supervision while asleep. Sleeping face down (the prone position) was observed in 73% of 253 SUDEP cases. The mechanisms seem to be impaired air exchange and dysfunction of the autonomic nervous system interfering with breathing. 5 Using a “Sleep Safe anti-suffocation pillow” could help. A “Smart Watch” detects shaking movements; it could send a text or phone alert to contacts to respond.
Another possible prevention for SUDEP is Epilepsy Surgery for excision of identified seizure foci. 6
Vagus Nerve Stimulation (VNS) involves a stimulator attached to the Vagus nerve in the neck to stimulate the brain.  VNS has been reported to reduce seizures and mortality in patients with refractory epilepsy. The exact mechanism how it reduces seizures is not known. 7 

  1.  Chen et al in Neurology 2016: 87, 718 
  2.  Greenlund et al in Epilepsy and Behavior 2017 
  3. Chen SC et al. "Patients with epilepsy are at an increased risk of subsequent stroke: A population-based cohort study." Seizure: volume 23, Issue 5, pages 327-410 (May 2014) 
  4. Mintzer S, et al. "Long-term effect of antiepileptic drug switch on serum lipids and C-reactive protein." Epilepsy Behavior. 58:127. Epub 2016. 
  5. Liebenthal JA, Wu S, et al. "Association of prone position with sudden unexpected death in epilepsy." Neurology. 2015; 84:703-709. 
  6. Sperling MR, et al. "A reappraisal of mortality after epilepsy surgery." Neurology. 86(21): May 24, 2016:1938-44. 
  7. Mayo Clinic. Vagus Nerve Stimulation 


Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.