Epilepsy is a brain disease that causes people to have seizures. With epilepsy, clusters of nerve cells called neurons do not work properly.
Neurons normally create tiny electrical signals in a steady rhythm. These signals tell other parts of the brain and body what to do. During a seizure, neurons create too many electrical signals, too quickly. Some doctors describe this as an electrical storm in the brain.
If you or a loved one are diagnosed with epilepsy, you may want to know: What is my life expectancy? What will my quality of life be like?
Doctors refer to this as a prognosis. Prognosis is a prediction of what is likely to happen with a disease.
Prognosis for epilepsy
It can be hard to predict what will happen with epilepsy. A person’s outcome will depend on all sorts of things, including:1-4
- Type of epilepsy
- Age at diagnosis
- Type and number of seizures
- How well seizures are controlled with treatment
- Family history of epilepsy
- Other health conditions, such as heart disease, stroke, head injury, or depression
There is no 1 course for people with epilepsy. With treatment, two out of 3 people with epilepsy can live seizure-free for 5 years. This is called remission. Remission is most possible in people with epilepsy of unknown cause.1,3
One out of 5 people with epilepsy will find it is drug-resistant. One out of 3 will move between remission and active epilepsy. Some are able to stop taking their medicines without seizures returning. Roughly 1 out of 10 have epilepsy that gets worse over time.1,2
Seizure number and severity matters. Poorly controlled seizures can reduce someone’s lifespan by 10 years. Those with controlled seizures may only have their life shortened by 2 years. Children with both seizures and learning problems are the most vulnerable to early death.1
Overall, people with epilepsy have a higher risk of dying early compared to the general population. The risk varies widely depending on your age and type of epilepsy. Those at highest risk of early death are:5
- Children
- Those with tonic-clonic (grand mal) seizures
- Those with drug-resistant (refractory) epilepsy
- Those with epilepsy and depression
- Those who do not take their anti-seizure drugs correctly
- Those who have seizures often
People are also at highest risk of early death soon after diagnosis. This risk decreases over time.5
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View all responsesImprovements over time
In general, people with epilepsy of unknown cause have a close-to-normal life expectancy. People with an inherited type of epilepsy may live 10 years less than the general population.1,3
Until the mid-1960s, about 1 in 3 people with epilepsy achieved remission. Remission means long-term freedom from seizures. In the 1970s and 1980s, someone with epilepsy of unknown cause lived 1 to 2 years less than someone without epilepsy. People with inherited epilepsy lived 5 to 7 years less.1,3
By 2010, people with epilepsy of unknown cause were living 2 to 3 years longer than someone without epilepsy. This may be because people who live with epilepsy for a long time engage in fewer risky behaviors and get more health checkups.3
Long-term risks of epilepsy
It is important to remember that most people do not die from their epilepsy. However, there are times when having a seizure can be dangerous. A seizure at these times increases the chances of serious injury:2,5
- Falling – Head injuries, broken bones, and bruises are common if someone falls during a seizure.
- Driving – Accidents can be serious or even deadly if someone has a seizure while behind the wheel of a car or other heavy machinery.
- Swimming – People with epilepsy are 15 to 19 times more likely to drown while swimming or bathing.
- Pregnancy – Seizures while pregnant are dangerous to both the mother and baby. Certain epilepsy drugs increase the risk of birth defects. But many epilepsy drugs are safe to take while pregnant.
- Status epilepticus – It is rare, but some people with epilepsy have seizures that will not stop without medical help. This is called status epilepticus.
- Sudden death (SUDEP) – About 1 percent of people with epilepsy die suddenly. People with uncontrolled or frequent seizures, those who take more than 3 anti-seizure drugs, and those who do not take their medicines correctly are at highest risk of SUDEP.
Doctors know more about epilepsy than ever, but there is still a great deal unknown. More research is needed into what causes many deaths due to epilepsy.