SUDEP Awareness Day 2015: “Are You SUDEP Savvy?”

Today is SUDEP Awareness Day.  The Epilepsy Foundation and SUDEP Action are collaborating to raise awareness for SUDEP (Sudden Unexplained Death in Epilepsy.)  The theme this year is “Are you SUDEP Savvy?’

Sudden Unexplained Death in Epilepsy happens when a person with epilepsy dies unexpectedly and is usually in good health.  It is not related to an accident or status epilepticus (a prolonged seizure or repetitive seizures).

About 1 in 1000 people with epilepsy die of SUDEP each year.  For people with poorly controlled seizures, the percentage is worse—1 in 150 have a chance of dying of SUDEP. It occurs mostly in people with generalized tonic clonic seizures (grand mal).  Also, much of the time, SUDEP occurs in bed when the victim is faced-down.

Researchers have been studying SUDEP for many years, and although there is still a lot we don’t know, they have come up with some possible causes for SUDEP:

·         malfunctions in the brain,

·         irregular heart rhythms, and

·         problems with breathing.

There are many things you can do to prevent SUDEP.

·         Take medications regularly.

·         Consult your doctor on a regular basis to optimize your epilepsy treatment and aim to have as few seizures as possible.

·         If current treatments are not working, consider changing them.

·         Eat and sleep regularly.

·         Do not drink alcohol excessively or smoke.  Know your limits.  Preferably abstain.

·         Keep a seizure diary and monitor your daily condition.

The most important thing is to talk about it with your doctor so you know what your risks are and what you need to do to lower them and live a healthy life.

As more research is done, one day there may be a cure, but until then, we will have to be vigilant and take steps to try to prevent SUDEP using the tools we have.