October 20th is SUDEP Action Day – It’s #Time2Change How We Talk About SUDEP
SUDEP Action Day is a day to honour the memories of those we have lost to Sudden Unexpected Death in Epilepsy (SUDEP) and to bring attention to SUDEP. SUDEP Action Day is held annually on the third Wednesday in October. This year, SUDEP Action Day is October 20th.
While SUDEP is a difficult topic for those of us living with epilepsy, it is important to know what we can do to help reduce our risk. During this year’s #Time2Change How We Talk About SUDEP campaign, join us in focusing on prevention.
SUDEP refers to the premature passing of a person with epilepsy that is not associated with any other known cause of death. It is primarily associated with frequent or uncontrolled tonic-clonic seizures (especially those that occur during sleep) and has been found to occur in approximately 1 to 2 people of every 1,000 people with epilepsy annually. Find out more about SUDEP here.
Knowing how to prevent SUDEP is important for those of us with epilepsy. In fact, people with epilepsy in Canada selected “How can the risk of SUDEP (Sudden Unexpected Death in Epilepsy) be reduced in people with epilepsy?” as one of the top 10 priorities for epilepsy research in Canada.
According to the International League Against Epilepsy (ILAE), here are some ways that we can reduce the risk of SUDEP:
- Work towards as much seizure control as possible
- Take your medications as prescribed to you by your healthcare provider
- If your seizures persist despite medication, pursue medication adjustments/changes or other treatment options like surgery, Vagus Nerve Stimulation (VNS) or the Ketogenic Diet, if applicable to you
- Avoid any known triggers for your seizures
- Get enough sleep. Avoid sleep deprivation and irregular sleep patterns
- Avoid drinking too much alcohol or using other drugs
- Train someone in the house on seizure first aid
- Use a seizure alert device. An overnight monitoring device may be useful for those of us who experience seizures during sleep. For those of us at high risk, a sleep companion or sleep supervision could be considered.