Video: Purple Day's Cassidy Megan explains SUDEP
Brochures: for download, in English/French/Spanish
FREQUENTLY ASKED QUESTIONS
=> What is SUDEP?
SUDEP refers to the sudden and unexpected death of a healthy person with epilepsy where no cause of death is found at autopsy.
=> What causes SUDEP?
The cause of SUDEP is not yet known. As it usually occurs at night, during sleep, and is most often unwitnessed, understanding exactly what happens during the last moments of life is difficult. There is often, but not always, evidence of a seizure (particularly a generalized tonic-clonic seizure) before death.
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:
- 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.
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 (GTCS). The more uncontrolled or frequent these seizures are, the higher the risk of SUDEP.
Oher 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.
 Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors
Cynthia Harden, Torbjörn Tomson, David Gloss, Jeffrey Buchhalter, J. Helen Cross, Elizabeth Donner, Jacqueline A. French, Anthony Gil-Nagel, Dale C. Hesdorffer, W. Henry Smithson, Mark C. Spitz, Thaddeus S. Walczak, Josemir W. Sander, Philippe Ryvlin; Neurology Apr 2017, 88 (17) 1674-1680; DOI: 10.1212/WNL.0000000000003685
=> Can SUDEP be prevented?
The best way to reduce the risk of SUDEP is to have as few seizures as possible.
To help achieve this:
- Keep regular appointments with your healthcare provider, even if your seizures seem well controlled. It is important to regularly review your SUDEP risk and the steps you take to minimise that.
- 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.
=> How common is SUDEP?
Research studies estimate loss due to SUDEP each year is:
1 in 1000 people with epilepsy and 1 in 4500 children with epilepsy;
about 1 in 100 people with frequent epileptic convulsions that are poorly controlled with medications.
the identification of SUDEP is poor, due to lack of awareness;
anatomic findings (eg tongue/lip bite) implicating epilepsy as a cause or contributor to the death are commonly lacking;
autopsies may not be conducted, which are necessary for making the diagnosis by exclusion required for SUDEP; and
there are challenges to, and inconsistencies in, the investigation and certification/recording of these deaths.