About 140,000 people around the world die each year from epilepsy, out of roughly 24 million people living with it.1PubMed Central. Global, regional, and national burden of epilepsy, 1990–2021: a Global Burden of Disease study That count is almost certainly too low, because many seizure deaths get recorded as heart problems or other causes. For most people with epilepsy the yearly risk of sudden death is small, about 1 in 1,000. It is concentrated in people whose convulsive seizures aren’t controlled, and that is something that can often be changed.
What the Yearly Numbers Look Like
Spread across the whole world population, epilepsy is listed as the cause of about 1.7 deaths per 100,000 people each year.2PubMed Central. Global, regional, and national burden of epilepsy, 1990–2021: a Global Burden of Disease study Men die from it at a higher rate than women, about 2.1 versus 1.4 per 100,000.3PubMed Central. Global, regional, and national burden of epilepsy, 1990–2021: a Global Burden of Disease study Around 3.3 million people are newly diagnosed each year, and new cases have edged up since 1990.4PubMed Central. Global trends and burden of idiopathic epilepsy: regional and gender differences from 1990 to 2021 and future outlook
A second figure answers a different question. Among people living with epilepsy, about 1.2 in every 100 die each year from any cause, including illnesses unrelated to seizures.5PubMed Central. Mortality in patients with epilepsy: a systematic review The rate was about 1.5% for men and 1.1% for women.6PubMed Central. Mortality in patients with epilepsy: a systematic review That group includes older people and those whose epilepsy came from strokes, tumors or brain injuries, which carry their own risks.
So the two figures describe different things. The 140,000 counts only deaths certified as epilepsy. The 1.2% counts every death among people who have epilepsy, so someone with epilepsy who dies of cancer appears in the second figure but not the first. Neither number alone tells an individual their personal risk, which depends far more on seizure type and how well seizures are controlled. Many of the deaths behind the 1.2% happen in older adults with other serious illnesses, and a young adult with well-controlled seizures sits well below this average.
Why the Real Count Is Probably Higher
Coroners and medical examiners rarely write sudden death in epilepsy on a death certificate, even when an autopsy finds no other cause.7PubMed. Coroner and medical examiner documentation of sudden unexplained deaths in epilepsy In one review of coroner records, only 1 of 13 clear sudden epilepsy deaths was certified that way, and others were often listed as heart disease.8PubMed Central. Implications of Death Certification on Sudden Unexpected Death in Epilepsy (SUDEP) Research In about 1 in 4 deaths reported by families, the family’s account fit a sudden epilepsy death but the official record didn’t say so.9PubMed. The epilepsy deaths register: Third-party reports of SUDEP in adults and older adolescents Global tallies built from death records therefore likely underestimate seizure deaths. Families can ask the coroner whether a sudden epilepsy death was considered.
The undercount also helps explain an odd pattern: studies from high-income regions show higher death rates than low-income ones, about 1.23% versus 0.99% a year. That likely reflects better recording, since poorer countries have higher death rates when measured carefully.
Sudden Unexpected Death in Epilepsy
Doctors use the term SUDEP (sudden unexpected death in epilepsy) for a person with epilepsy who dies suddenly with no other cause found, often in bed. Across all people with epilepsy, about 1.1 to 1.6 in every 1,000 die this way each year.10PubMed Central. Current perspectives in sudden unexpected death in epilepsy (SUDEP): epidemiology, research approaches and pathways to prevention Combined studies put the average at about 1.4 per 1,000 per year.11PubMed. Incidence rate of sudden death in epilepsy: A systematic review and meta-analysis For people whose seizures don’t respond to medicine, the yearly risk is about 2.6 to 4.8 per 1,000.12PubMed Central. Current perspectives in sudden unexpected death in epilepsy (SUDEP): epidemiology, research approaches and pathways to prevention Over a whole lifetime, the risk can reach 5% to 20% depending on the epilepsy type and when it started.13PubMed Central. Current perspectives in sudden unexpected death in epilepsy (SUDEP): epidemiology, research approaches and pathways to prevention
Typically the person is found in bed, sometimes face down, after an unwitnessed night seizure. Breathing and heart rhythm can fail in the minutes after a convulsive seizure.
A tonic-clonic seizure is the convulsive kind, with stiffening, jerking and loss of consciousness. Having these seizures, and having them often, is the single most important risk factor for sudden death.14PubMed. Risk Factors for Sudden Unexpected Death in Epilepsy (SUDEP) and Their Mitigation People who had a convulsive seizure at night in the past year faced about 15 times the risk.15PubMed Central. Clinical risk factors in SUDEP Someone sleeping nearby or a listening device at night may lower the risk.16PubMed. Risk Factors for Sudden Unexpected Death in Epilepsy (SUDEP) and Their Mitigation
Anyone with convulsive seizures carries some risk, even if seizures are occasional. Risk rises with how often convulsive seizures happen.
In the neurologist’s office, ask how your seizure type and frequency affect your sudden-death risk. Mention any seizures that happen during sleep, even suspected ones, and keep a seizure diary so the doctor sees your real frequency.
Seizures That Don’t Stop
Status epilepticus means a seizure lasting more than 5 minutes, or repeated seizures without recovery between them. It is a medical emergency. Early on, heart rate, blood pressure, sugar and body temperature climb.17PubMed Central. Status epilepticus After about 30 minutes, blood flow to the brain drops, pressure inside the skull rises and blood pressure falls.18PubMed Central. Status epilepticus Deaths range from about 5% to 39% depending on the cause, how long it lasts and the person’s age.19PubMed Central. Mortality, and life expectancy in Epilepsy and Status epilepticus—current trends and future aspects
When the seizure doesn’t respond to first medicines, death rates reach up to about 39%, compared with about 10% when it does.20PubMed Central. Mortality, and life expectancy in Epilepsy and Status epilepticus—current trends and future aspects Among older adults, 22% to 38% die in the short term.21PubMed Central. Mortality, and life expectancy in Epilepsy and Status epilepticus—current trends and future aspects In one large group, about 7.5% died in hospital and another 7.7% within a month of going home.22PubMed. Causes of death in patients with status epilepticus When no underlying cause such as stroke is found, long-term survival is about the same as the general population.23PubMed. Long-term mortality after a first episode of status epilepticus A first seizure caused by a stroke, head injury or brain infection carries about 9 times the risk of death within 30 days compared with a first unexplained seizure.24PubMed. Is a first acute symptomatic seizure epilepsy? Mortality and risk for recurrent seizure
Speed matters because the longer a seizure lasts, the harder it is to stop with medicine. Seizures lasting a day or more doubled long-term death risk compared with those under 2 hours.
To someone watching, a long convulsive seizure can be misleading. The jerking may slow or become subtle while the brain is still seizing, so a calmer-looking person who still isn’t responding is not necessarily recovering. Note the time it began; treatment choices depend on how long it has lasted.
Call emergency services if a convulsive seizure lasts longer than 5 minutes, or if a second seizure starts before the person wakes up. Call too for a first-ever seizure, an injury, breathing trouble or a seizure in water. If a rescue medicine has been prescribed, give it as instructed while waiting.
Drowning, Crashes and Other Accidents
People with epilepsy drown at about 10 to 19 times the rate of others.25PubMed. Drowning in epilepsy: A population-based case series26PubMed. Drowning in people with epilepsy: how great is the risk? The risk was far higher for people with learning disabilities and those in residential care.27PubMed. Drowning in people with epilepsy: how great is the risk? In one region, about 1 in 20 of all drowning deaths were linked to seizures.28PubMed Central. Drowning deaths in people with epilepsy
A person who cannot hold their head up can inhale water before anyone notices. Even shallow water is enough, so a bathtub is not safe just because it is small.
Shower instead of bathing, or never bathe alone. Swim only with someone watching who knows about the seizures, and wear a life jacket on boats and near open water. Parents should supervise bath time even for older children with seizures.
Driving deaths are comparatively rare: only about 0.2% of US driver deaths, around 86 a year, were tied to seizures.29PubMed. Mortality in epilepsy: driving fatalities vs other causes of death in patients with epilepsy Most places require a seizure-free period, often months, before driving. Rules vary, so check your local licensing authority and ask your doctor.
Children and Dravet Syndrome
Most children with epilepsy face low risk, and many childhood epilepsies are outgrown. Dravet syndrome is a rare, severe genetic epilepsy that starts in infancy. It carries the highest sudden-death risk known, nearly 10 per 1,000 per year, mostly before age 20.30PubMed Central. Current perspectives in sudden unexpected death in epilepsy (SUDEP): epidemiology, research approaches and pathways to prevention Between about 4% and 21% of children with it die early.31PubMed Central. Spotlight on mechanism of sudden unexpected death in epilepsy in Dravet syndrome About half these deaths are sudden epilepsy deaths and about a third are seizures that won’t stop.32PubMed. Mortality in Dravet syndrome: A review About 3 in 4 deaths happen before age 10.33PubMed. Mortality in Dravet syndrome: A review
Parents can ask the doctor whether their child’s type is a high-risk syndrome. Children with Dravet syndrome benefit from night monitoring and a rescue plan, and from avoiding known triggers such as overheating and fever where possible.
Other Causes of Death Linked to Epilepsy
People with epilepsy die by suicide about 2.3 to 2.5 times as often as others.34PubMed. Elevated suicide risk in individuals with epilepsy: a systematic review and meta-analysis Depression is common in epilepsy and strongly linked to suicidal thoughts.35PubMed Central. Suicidality and epilepsy: A systematic review and meta-analysis Some seizure medicines, the epilepsy type and other brain conditions can add to the risk.36PubMed Central. Suicidality and epilepsy: A systematic review and meta-analysis
Low mood, hopelessness or loss of interest lasting weeks should be raised with a doctor. Mention mood changes after starting a new seizure medicine. If someone talks about ending their life, contact a crisis line or emergency services.
Some seizure medicines can rarely cause severe skin reactions with blistering and peeling, and about 4% of those cases are fatal.37PubMed Central. Cutaneous Adverse Drug Reactions to Antiseizure Medications Another rare reaction affecting liver and organs is fatal in about 4% of cases.38PubMed Central. DRESS syndrome: A literature review and treatment algorithm A new rash, fever, mouth sores or blistering in the first weeks of a new medicine needs urgent care. Don’t stop a seizure medicine abruptly without medical advice, since that can trigger seizures.
Where You Live Changes the Risk
Death rates from epilepsy are about six times higher in low- and middle-income countries than in wealthy ones.39PubMed Central. Epilepsy in low- to middle-income countries Many people there can’t get diagnosis, medicines or seizure care.40PubMed Central. Premature mortality of epilepsy in low- and middle-income countries: A systematic review from the Mortality Task Force of the International League Against Epilepsy Much of this extra death is preventable with basic treatment.
How to Lower the Risk of Dying From Seizures
People whose medicine-taking slipped had about 8 to 9 times the risk of sudden death.41PubMed. Adherence patterns in antiseizure medications influencing risk of sudden unexplained death in epilepsy: A data linkage study using dispensed prescriptions Seizure medicines work by keeping a steady level in the body, so skipping doses can let that level fall low enough for a convulsive seizure to break through. Missed doses are common and not a moral failing, so a routine, such as linking pills to a daily habit, helps more than relying on memory. A pill organizer or phone reminders can help too.
Still, about 3 in 4 people who died suddenly were taking medicine as prescribed.42PubMed Central. Assessment of antiseizure medication adherence based on postmortem toxicology and claimed prescriptions in cases of sudden unexpected death in epilepsy Adding another medicine when seizures continue may offer protection.43PubMed. Adherence patterns in antiseizure medications influencing risk of sudden unexplained death in epilepsy: A data linkage study using dispensed prescriptions44PubMed Central. Antiseizure Medications and Sudden Unexpected Death in Epilepsy: An Updated Review Ask the doctor about changing medicines if convulsive seizures continue, and about referral to an epilepsy center if two medicines have failed.
Successful epilepsy surgery lowered death from all causes by about 30%.45PubMed. Reduced long-term mortality after successful resective epilepsy surgery: a population-based study After 15 years, people who had surgery lived about as long as or longer than the general population.46PubMed Central. Long‐term survival after adult epilepsy surgery: Mortality and predictors in a large cohort
Seizure alarms let caregivers respond right away, which likely lowers risk.47PubMed. Wearable devices for sudden unexpected death in epilepsy prevention No study has yet proven alarms prevent sudden death, though.48Practical Neurology. Seizure Detection and SUDEP Prevention One night sensor caught 86% of seizures but about half its alerts were false.49PubMed Central. Multimodal nocturnal seizure detection in a residential care setting Options include a shared room, baby monitor, bed sensor or wrist device. Plan who will respond, and expect some false alarms. Learn seizure first aid as well: roll the person onto their side and time the seizure.