Overall, life expectancy is comparable to the general population.1 But in certain types of epilepsy, the risk of premature death is higher than that of the general population. Most of the increased risk is directly related to what causes your epilepsy.
Only a small number of deaths in the epilepsy patient population are epilepsy related. These are deaths caused by a seizure or accidents during or immediately after the seizure, as well as sudden unexpected death for which no cause of the death can be identified. SUDEP (see below) is one example of this. Sudden unexpected deaths are more common in patients with poorly controlled, intractable epilepsy. Improved seizure control, medical advice and avoiding the hazards that occur during a seizure are key. Regular medical follow-up care and supervision may help reduce the risks of epilepsy-related death occurring.
What causes epilepsy?
Epilepsy can be categorized into three broad groups:
Common among children, idiopathic epilepsy is an inherited type of epilepsy with a strong genetic component and no structural brain abnormalities. Provoked seizures (for example, from flashing lights) are often seen in idiopathic epilepsy.
Cryptogenic epilepsy is the type with no known cause and often involves unprovoked seizures. This accounts for approximately 20% of seizure cases.
Symptomatic epilepsy is caused by an injured brain. Common causes: head injuries, central nervous system infections, loss of oxygen to the brain, strokes, brain tumors and brain surgery.
How can your epilepsy result in premature death?
Premature deaths in people living with epilepsy: failure to take antiseizure medications as prescribed; the seizures themselves; collateral damage related to a seizure; reduced quality of life that comes with living with epilepsy; fatal unintentional injuries (for example, falls and burns), or through aspiration pneumonia during a seizure.
Serious transportation accidents: Seizures — which can result in impaired awareness and uncontrolled motor activity — put people living with epilepsy at increased risk of serious transportation accidents. This increased risk doesn’t apply to just car accidents but to the increased risk of pedestrian accidents and increased risk of bicycle accidents.
Drowning: because seizures can lead to a loss of consciousness or uncontrolled motor activity, people living with epilepsy are at increased risk of drowning. The risk of drowning is much higher in people with epilepsy. Despite my warnings, one of my young surfer patients ignored this warning and continued surfing. I don’t know his current condition While cases of drowning often occur in the bathtub (Mark Twain’s adult daughter had epilepsy; she drowned in her bath, for example), less frequently patients die in the shower; the body, face-down, blocks the drain resulting in drowning in just inches of water.
Status epilepticus: status epilepticus is a condition in which a person experiences abnormally prolonged seizures (longer than five minutes in the case of generalized tonic-clonic seizures; they usually last under 2 minutes) that can lead to long-term consequences, including brain damage and death.
Psychiatric illness: people with epilepsy commonly have depression, which increases the risk of suicide. The high incidence and prevalence of psychiatric illness (including impulsivity, psychosis, and substance abuse) correlates with the duration and severity of epilepsy. Depression is also associated with not taking medications as recommended, which can increase mortality.
What is a sudden unexpected death in epilepsy (SUDEP)? Premature mortality in people with epilepsy can also be attributed to a sudden unexpected death in epilepsy (SUDEP): Blog #108: SUDEP—Sudden Death in Epilepsy—Occurs in All Types of Epilepsies; Blog #74: New Studies Reveal High SUDEP Risk of Death in Poorly Controlled Epilepsy. In the US, there are at least 2,750 cases of SUDEP per year. SUDEP refers to deaths among people with epilepsy that cannot be attributed to other known causes. Studies suggest that for every 100,000 people with epilepsy, there will be approximately 116 cases of SUDEP. While the causes of SUDEP are not yet fully understood, most cases occur during or immediately after a seizure and generally during sleep. Possible seizure-related factors contributing to SUDEP include breathing and/or heart rhythm disruptions.
Does epilepsy shorten your life expectancy? People with epilepsy are two to three times more likely to die early than those without the condition. This suggests that epilepsy can shorten life expectancy by ten years for those living with symptomatic epilepsy and by two years for those with idiopathic/cryptogenic epilepsy where no serious brain pathology can be identified. While life expectancy is reduced in cases of symptomatic epilepsy (by approximately seven years), people with cryptogenic epilepsy had an almost normal life expectancy.
SUMMARY: While epilepsy can increase your risk of premature death, it is possible, in most cases, to manage these risks with anti-epileptic drugs, appropriate mental healthcare, and lifestyle changes. Mortality in patients with newly diagnosed epilepsy is higher than in patients with chronic epilepsy due mainly to the underlying epilepsy cause.
MY ADVICE: making family, friends, and colleagues aware of the risks and how they might be able to help you reduce these risks can go a long way to keeping you safe. Be certain that you have follow-up care and observation by your physician for your best chance of thriving with epilepsy.
1. Granbichler CA, Zimmerman G, Oberaigner W, et. al. Potential years lost and life expectancy in adults with newly diagnosed epilepsy. Epilepsia. 2017;58(11): 1939-1945.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.