Epilepsy is generally not life threatening. No surprise there. However, we do know the people with epilepsy do face a greater risk of death than the general population due to a range of factors ranging from accidents related to the underlying causes of epilepsy (tumors, genetic conditions, etc.), accidents and SUDEP – Sudden Unexpected Death in Epilepsy.
SUDEP isn’t new. But talking about it is. It has been recognized at least as far as back as 1910, but until recently physicians were often reluctant to inform their patients about it out of fear of causing unnecessary concern.
But experience in recent years has highlighted the importance of talking about it. When it comes to SUDEP, knowledge is power. The risks can be lessened, and people with epilepsy deserve to have the facts they need to make informed decisions about their condition and overall health.
What is SUDEP?
Sudden Unexpected Death in Epilepsy refers to the death of a person with epilepsy, without warning and when no cause of death can be found.
How Common Is It?
Recent studies suggest the rate of SUDEP at about one death per 1000 people with epilepsy per year. That being said, it’s believed 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 aren’t well-controlled with medication, the rate rises to 1 in 100 per year.
Causes of SUDEP
In short, we’re not sure. Since most sudden deaths of people with epilepsy are unwitnessed, it’s difficult to determine what exactly occurs in the last moments of life. By definition, the post mortem does not reveal a cause of death – which suggests the cause is a disturbance of function, not structure. 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.
To put it another way, the precise cause of death is still not understood.
But we are getting closer to understanding SUDEP. There is evidence that frequently the death is preceded by seizure activity. Recent studies strongly support a close relationship between seizure episodes (especially generalized tonic-clonic seizures and SUDEP).
What You Can Do
While we admittedly don’t yet know the exact causes of SUDEP, we have discovered a handful of risk factors and things you can do to minimize them.
- Have an open discussion with your physician and healthcare team about SUDEP and how you can minimize your risk.
- 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.
- Ensure you have regular medical monitoring.
- 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.
- Get adequate sleep.
- Ensure a good diet and proper nutrition.
- Avoid potential dangers such as excessive alcohol intake.
- Maintain your social support network and ensure they understand your epilepsy as well as SUDEP.
- Develop skills to recognize and control the effects of emotions and stress in your life.