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
- Chen et al in Neurology 2016: 87, 718
- Greenlund et al in Epilepsy and Behavior 2017
- 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)
- Mintzer S, et al. "Long-term effect of antiepileptic drug switch on serum lipids and C-reactive protein." Epilepsy Behavior. 58:127. Epub 2016.
- Liebenthal JA, Wu S, et al. "Association of prone position with sudden unexpected death in epilepsy." Neurology. 2015; 84:703-709.
- Sperling MR, et al. "A reappraisal of mortality after epilepsy surgery." Neurology. 86(21): May 24, 2016:1938-44.
- 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.
