It's Time to Talk About SUDEP

Epilepsy is not generally life threatening, however, people with epilepsy face a greater risk of death than that of the general population from a range of factors including:  Accidents, issues related to the underlying causes for epilepsy (i.e. tumors or genetic conditions), and from SUDEP - Sudden Unexpected Death in Epilepsy.

SUDEP is not new.  It has been recognized since at least as far back as 1910. Therefore, the risk is not recent - it has always existed.  However, in the past there was a reluctance by physicians to inform their patients about SUDEP for fear of causing unnecessary alarm.  Experience in recent years has taught us of the need to talk about SUDEP and ensure that people with epilepsy have the facts they need to make informed decisions about their epilepsy and overall health.
What is SUDEP?
SUDEP, or 'Sudden Unexpected Death in Epilepsy' refers to the death of a person with epilepsy, without warning, and where no cause of death could be found.
How Common is SUDEP?
Recent studies estimate the rate of SUDEP at about one death per 1000 people with epilepsy per year.  It is believed that SUDEP deaths may be under-reported due to lack of awareness, and inconsistencies in the investigation and recording of these deaths.  For those with frequent convulsions that are not well controlled with medication, the rate may approach 1 in 100 per year.

Causes of SUDEP

The precise mechanism, or cause, of death is, as yet, not understood.  Most sudden deaths of people with epilepsy are unwitnessed and this makes it difficult to determine what, exactly, occurs in the last moments of life.  By definition, the post mortem does not reveal a cause of death suggesting that the terminal event is due to disturbance of function, not structure.  Most frequently, but not always, there is evidence for seizure activity prior to death and recent studies strongly support a close relationship between seizure episodes (especially generalized convulsions) and SUDEP.

Various potential mechanisms have been proposed and these mainly involve the cardiac and/or respiratory systems.  It is unknown whether these mechanisms are individually or jointly responsible, what leads to the fatal cardiac event and/or the cessation of breathing, what role the brain and/or seizure plays in the whole process or, indeed, whether the same events trigger SUDEP in each person.
Risk Factors
When the facts that are known about SUDEP are reviewed, some positive news emerges:  Even though the actual physical mechanisms for SUDEP are not clearly understood, it is possible to lower the risk of SUDEP.
  1. Have an open discussion with your physician and healthcare team about SUDEP and how you can minimize your risk.
  2. Maximize seizure control, especially if you have frequent tonic-clonic seizures.  It is now recognized that the strongest risk factor for SUDEP is having frequent tonic-clonic seizures.
  3. Ensure you have regular medical monitoring.
  4. Take medication as prescribed.  This is important!  It can be very dangerous to change or stop taking your medication without the advice of your physician.
  5. Get adequate sleep.
  6. Ensure a good diet and proper nutrition.
  7. Avoid potential dangers such as excessive alcohol intake.
  8. Maintain your social support network and ensure they understand your epilepsy as well as SUDEP.
  9. Develop skills to recognize and control the effects of emotions and stress in your life.
As can be seen, understanding epilepsy, SUDEP, and the potential risks of your condition will allow you make decisions that could save your life.  Knowledge is POWER and there is much you can do much to lessen, if not eliminate, the risk of SUDEP.

We are deeply indebted to SUDEP Aware for their assistance in providing this information.