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Research indicates that there is likely more than one explanation for SUDEP. According to one theory, electrical discharges in the brain may change the electrical status of the heart, affecting its rhythm. Another theory is that breathing is stopped by a seizure. In either case, a post-mortem examination reveals no anatomical cause of death.

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The risk remains uncertain, and more research is badly needed. It has been estimated that approximately one in 1,000 people with epilepsy will die of SUDEP each year.

However, the true number of deaths due to SUDEP is unknown and is likely higher than these estimates. This is primarily because:

• The identification of SUDEP is poor due to lack of awareness;
• Anatomic findings (e.g. tongue/lip bite) implicating epilepsy as a cause or contributor to the death are commonly lacking;
• Autopsies may not be conducted, which are vital for making the diagnosis by exclusion required for accurate determination of SUDEP, and;
• There are challenges to, and inconsistencies in, the investigation and certification/recording of these deaths.

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When people with epilepsy are told about SUDEP, they ask, “Will it happen to me?” The chances of dying from it are remote. Some people may be more at risk than others, especially young people aged 20-40 with tonic-clonic (grand mal) seizures which are not fully controlled by medication. Not taking medication correctly or regularly, being alone during seizures and using alcohol or street drugs may also be factors.

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The highest risk factor for SUDEP is poorly controlled tonic-clonic seizures. Achieving better seizure control is important to reducing the risk of SUDEP.

Some ways to achieve this are by taking one’s medication regularly, tracking one’s seizures to better understand personal triggers and being able to recognize unusual seizure activity.

SUDEP occurs most frequently at night and there is some evidence that room-sharing or monitoring devices may reduce the risk.

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It is important for people with uncontrolled epilepsy to balance the awareness of their slightly increased risk of death with the need to live as normal a life as possible. There are usually very few things that people with epilepsy cannot do. However, anything and everything they can do to safely manage and reduce their seizures can reduce the risk of SUDEP.

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The risk of SUDEP, while relatively small, is nevertheless real. We believe it should be discussed openly by doctors with patients and their families. Direct and reasoned discussion may improve compliance with medication and lifestyle regimens. It may also prevent the family from feeling betrayed by the doctor should a sudden death ever occur. “Why weren’t we told?” is a common reaction of family members bereaved by SUDEP.

In some cases of SUDEP, individuals are found to have sub-therapeutic blood levels of anti-epileptic drugs. It is prudent to try to predict those who might be most susceptible to SUDEP, particularly people aged 20 to 40 with poorly controlled tonic-clonic seizures. It may be beneficial for these patients to be monitored by their physician with increased frequency during this period and compliance assessed more frequently.

If a SUDEP death should occur, we believe it is important that it be formally identified as SUDEP. In addition to information, families bereaved by SUDEP need to be offered a compassionate ear and grief counselling.