Sudden Unexpected Death in Epilepsy (SUDEP) refers to the death of a person with epilepsy without warning and where no cause of death could be found.
Although most people with epilepsy live long and healthy lives, their increased risk of death compared to the general population is a serious concern. Some people with epilepsy may die due to accidents or the underlying cause of their epilepsy, such as tumors or genetic conditions. It is less known that people with epilepsy are also at risk of sudden and unexpected death (SUDEP). Being aware of SUDEP, learning more about it and discussing the risk with healthcare providers are all positive ways to face this difficult issue.
SUDEP should be considered along with other factors when making decisions about your epilepsy. The cause of SUDEP may be unknown but there are measures that can be taken, such as controlling your seizures, to lower your risk.
How common is SUDEP?
Recent studies estimate the rate of SUDEP at about one death per 1,000 people with epilepsy per year. This may be an underestimation because of poor case identification due to lack of awareness and inconsistencies in the investigation and recording of the deaths. In people with frequent epileptic convulsions that are poorly controlled with medications, the rate may approach 1 in 100 per year.
What causes SUDEP?
The cause of SUDEP is unknown. It usually occurs at night or during sleep, and this makes it hard to find out exactly what happened during the last moments of life. There is often, but not always, evidence of a seizure before death. A seizure at the time of death is not needed for diagnosis of SUDEP.
It is unlikely that a single cause will explain all SUDEP deaths. Advances in research are identifying critical risk factors and a number of potential mechanisms for SUDEP.
Researchers are investigating problems with breathing, heart rhythm, and brain function as possible causes of SUDEP. During seizures, there is often a change in breathing and heart rhythm. In most people with epilepsy, this is not dangerous. Sometimes, a more serious drop in blood oxygen levels or changes in heart rhythm may occur. Seizures may also affect the brain’s control of breathing and heart function. In addition, researchers are exploring genetic links between seizures and heart rhythm abnormalities. Further research is urgently needed to reveal these possible causes of death and to help people with epilepsy understand how to lower their risk of SUDEP.
What are the risk factors for SUDEP?
The strongest risk factor for SUDEP is having frequent generalized tonic-clonic (grand mal) seizures. The more frequent these seizures are, the higher the risk of SUDEP.
Other risk factors are being investigated. To help minimize your risk, it is important to discuss SUDEP with your healthcare provider and remember that low risk is not the same as no risk. There are things you can do.
– Work with your healthcare provider to find the best way to treat your seizures, identify your seizure triggers and lower your risk.
– Make sure those around you know that you have epilepsy and what they can do to help you during and after your seizure.
How to lower the risk
The best way to reduce the risk of SUDEP is to have as few seizures as possible.
- Keep regular appointments with your healthcare provider.
- Take your seizure medications regularly and reliably. If you have concerns about side effects, it is important not to make changes to your medications without talking to your healthcare provider.
Identify and avoid triggers for seizures (such as lack of sleep, drinking too much alcohol or using recreational drugs).
- Ask your healthcare provider about other epilepsy treatments (such as surgery) when medications are not enough to control seizures.
Seizures put you at risk of injury and accidents. Take some simple steps to keep yourself safe:
- Modify your home and work environment to avoid seizure-related injuries.
- Take extra precautions around water, including swimming and bathing.
- If you have frequent seizures during sleep, consider using a monitoring device or sharing a room to alert family members when you are having a seizure.
Reprinted with permission from SUDEP Aware. SUDEP Aware has a variety of information pamphlets available on their website in English, French and Spanish.