- Most seizures end on their own and cause minimal concerns.
- Yet during some seizures, people can injure themselves, develop other medical problems or life-threatening emergencies.
- The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population.
- Sudden Unexpected Death in Epilepsy (SUDEP) is the most common of death for people with seizures. It is not frequent but it a very real problem that people need to be aware of.
Most people don’t understand how serious seizures can be. They either think that seizures are not a problem or that everyone may die from them. The truth lies somewhere in between. The types of problems people may have range from injuries, the effect of repeated seizures on the brain, seizure emergencies, and death.
This is a scary topic to read and talk about. But it’s important to know the facts so you know what questions to ask your doctor and health care team. Also, knowing your risks, or those of your loved ones, may help you learn what to do to lessen these risks!
What type of injuries can occur?
Some seizures rarely cause problems for people, but overall, the chance of injury is higher for people with uncontrolled seizures. The type of injuries a person may get depends on the type of seizure, how long the seizure lasts, where the seizure occurs, and if it develops into an emergency.
Some common injuries may include:
More serious problems, such as broken bones, concussions, head injury with bleeding into the brain, or breathing problems usually are seen in people who have generalized seizures with falls, long seizures or repeated or clusters of seizures.
Will a person with epilepsy die earlier than a person without epilepsy?
The overall risk of dying is 1.6 to 3 times higher in people with epilepsy than in the general population (IOM Report, 2013; Forsgren et al, 2005). The risk of dying among children with epilepsy may be a bit higher since most children without epilepsy have very low risks.
- People whose epilepsy is caused by things like a stroke or a brain tumor or other problem in the brain may die sooner from the cause of the epilepsy and not the seizures.
- How frequent and severe a person’s seizures are affects their risk for dying.
- People with seizures with no known cause may die only 2 years earlier than expected.
- People with seizures with a known cause may die 10 years earlier than expected.
What is the risk of seizure emergencies?
A long convulsive seizure (called "tonic-clonic status epilepticus") is a medical emergency. Generally speaking, a generalized tonic clonic seizure lasting 5 minutes or longer is a medical emergency.
- If seizures can’t be stopped or repeated seizures occur one right after another, permanent injury or death can occur.
- People with epilepsy can also die from problems that occur during or after a seizure, such as inhaling vomit. This problem can be prevented if the person is turned onto one side as soon as possible. This allows saliva, vomit or other fluids to drain out of the mouth and not go back into the lungs.
- Despite the risks, it’s important for people to remember that it is not common for people to die from seizures.
People who are not seizure-free need to be careful about possible accidents during a seizure:
- Death from drowning is more common among people with epilepsy.
- Drowning can even occur in a tub with only a few inches of water, so people who have seizures probably should stick to showers instead of baths.
- If you have epilepsy, your doctor -- and the agency in your state or province responsible for licensing drivers -- will help you decide whether it is safe and legal for you to drive.
- You should also be careful on train or subway platforms and when walking near busy streets.
- With some planning, you should be able to lead an active and safe life.
What about Sudden Unexpected Death in Epilepsy (SUDEP)?
SUDEP is the most common cause of death in people with epilepsy. SUDEP is thought to occur when a person with epilepsy who is in their usual state of health dies unexpectedly. The death is not related to an accident and no other cause of death can be found if an autopsy is done.
SUDEP is not frequent, but it’s a very real problem that people need to be aware of:
- It occurs in 1 out of every 1,000 people with epilepsy.
- It occurs more often in people with poorly controlled epilepsy. For example, 9 out of 1,000 people being considered for epilepsy surgery die of SUDEP.
- SUDEP rarely occurs in children.
- The person is often found dead in bed and doesn't appear to have had a convulsive seizure. They are often found lying face down.
- About a third of SUDEP cases show evidence of a seizure close to the time of death.
- No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm, breathing problems, or other problems in the brain or other body areas.
Help is on the way. The Epilepsy Foundation has established the SUDEP Institute:
- To spread the word about death in epilepsy,
- Help people learn ways to prevent it,
- Get help to people who have lost a loved one to SUDEP,
- Speed up research on the causes and prevention of SUDEP.