An important component of safety in epilepsy is the knowledge that seizures can sometimes be fatal. More people die as a result of seizures than from sudden infant death syndrome (SIDS) and house fires combined. One mortality risk for people with epilepsy is called Sudden Unexpected Death in Epilepsy, or SUDEP. It is one of the least talked about risks, but because of its tragic consequences, it is an aspect of epilepsy that people have many questions about. This next section represents some of the most commonly asked questions when it comes to SUDEP.
A: Most people with epilepsy live a full life span. However, there are potential factors associated with living with epilepsy and seizures that may increase the risk of early death:
- Accidents such as drowning, burning, choking, or falling can occur during a seizure, and may result in injuries that are serious or life-threatening.
- Very long seizures, or seizures that happen quickly and one after another (called status epilepticus), can be life-threatening. Ask your doctor about the scenarios under which status epilepticus could occur.
- People with epilepsy are more prone to experience depression and anxiety. In extreme cases, this can increase the risk of suicide.
- Some people with epilepsy may die suddenly and without explanation. This is SUDEP.
A: A death is referred to as SUDEP when a seemingly healthy person with epilepsy dies unexpectedly and no clear reason for the death can be determined. In order to be certain, an autopsy is required to rule out other causes of death. The most common criteria used to determine whether a death is due to SUDEP are:
- The person has epilepsy, which is defined as recurring unprovoked seizures.
- A person with epilepsy died unexpectedly, who was otherwise healthy.
- The death occurred suddenly and during normal activity (often during sleep).
- No obvious medical cause of death could not be determined at autopsy.
- The death was not the direct result of status epilepticus (or prolonged seizures).
A: The frequency of SUDEP differs depending upon the population studied. One challenge in pinpointing the numbers behind SUDEP is that information from county and state mortality registries is sometimes incomplete. Some physicians and death investigators are unfamiliar with SUDEP, and do not list SUDEP on a death certificate.
Due to a lack of large-scale, population-based studies and because SUDEP often goes unrecognized, the incidence of SUDEP is probably underestimated. Commonly accepted figures estimate that 1 in 1,000 people with epilepsy – both kids and adults – will die suddenly each year. That estimate increases to 1 in 150 for people whose epilepsy is not controlled by medication or another form of treatment (known as refractory epilepsy).
To address the need for better tracking of epilepsy deaths, the DDF worked with Illinois State Senator Dan Kotowski to pass the Danny Stanton SUDEP Act, which requires coroners and medical examiners in Illinois to report instances of SUDEP to the North American SUDEP Registry (NASR) at New York University.
A: At this time, the precise cause or causes of SUDEP are the focus of much research. According to the Centers for Disease Control and Prevention (CDC), research into the cause of SUDEP focuses on breathing changes, heart rhythms, and brain function. It is believed that most cases of SUDEP happen during or right after a seizure, but exactly how SUDEP causes death is still being studied. It is possible that different people may have different causes – or combinations of causes – and more research will be needed to clarify the most important causes. It is unlikely that a single cause will explain all SUDEP deaths.
A: While SUDEP is a risk for anyone with epilepsy, some people are at higher risk than others. It is important to discuss your individual risk level with your provider. Risk factors that are most consistently associated with SUDEP are:
- Uncontrolled, frequent seizures
- Generalized, convulsive seizures (formerly called generalized tonic-clonic, or grand mal, seizures)
- Convulsive seizures that happen during sleep
- Not taking anticonvulsant medicine as prescribed
- Stopping the use of anticonvulsant medicine abruptly
- Drinking alcohol
- Onset of epilepsy at a young age
- Many years of living with epilepsy
A: According to the CDC, these are measures that people with epilepsy and their families can take to minimize their risk:
- Seek maximum seizure control via strict treatment adherence, and avoid seizure triggers;
- Lead a healthy lifestyle, with regular physical activity and modifications that reduce stress and seizure activity;
- Visit with your doctor regularly, especially if convulsive seizures are not completely controlled.
- Ensure that family members and caretakers have knowledge of seizure first aid and of emergency resuscitation measures, including CPR and defibrillator use.
The Danny Did Foundation also encourages these additional steps:
- Consider supervision or monitoring during sleep hours to identify seizure activity;
- Consider the use of alternative therapies such as dietary options, research trials, surgical options, or devices/technologies that detect certain seizures and alert caretakers, to enable early intervention;
- Ask your doctor annually about new information they have learned about SUDEP, and whether your treatment plan includes all possible steps to reduce your risk.
- Inquire about and advocate for research that enables a better understanding of the causes of SUDEP;
- Become an advocate to increase SUDEP awareness among the public and the medical community.
A: If your provider has not spoken with you about the health risks associated with epilepsy, including SUDEP, schedule an appointment to meet with them. Mortality in epilepsy is a difficult topic, but no one can or will advocate for your loved one better than you.
- We suggest some questions to ask, designed with the purpose to enhance communication and to minimize the epilepsy-related risks for your loved one.
- What is the exact diagnosis?
- What is likely causing the seizures?
- What are the treatment options, and what are some alternative approaches?
- What side effects can be expected with treatment, and how can they be managed?
- What kinds of tests do we need, and would more frequent testing help?
- Should we see an epileptologist?
- Ask about seizures that occur during sleep.
- What types of devices exist that can alert a caregiver when seizure activity occurs?
- Ask about MRI tests, both with and without contrast.
- Ask the doctor to discuss the risks presented by epilepsy, including SUDEP.
- What should prompt a call between scheduled visits?
A: A variety of options exist, from implanted technologies to worn devices to non-invasive systems, that can be helpful in alerting your loved ones to certain types of seizures and enabling early intervention. Some are listed on the Seizure Devices Page, along with factors to consider when selecting a device. Danny Did does not endorse any one device over others. We simply encourage you to investigate which option could be a fit for you and your loved one. To date, no seizure detection/monitoring devices have been proven to predict or prevent SUDEP. If you find a system that seems like a fit for your needs, but financial constraints are a barrier to access, you can apply for funding.
More research and advocacy are needed to answer the questions that remain about SUDEP. The topics listed above address some of the basic and frequently asked questions. For information related to your individual situation, consult with your healthcare team. SUDEP is a topic that should be reviewed and discussed with your healthcare team. Information from a medical professional that knows your specific case background is the best source.
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