What is SUDEP?
SUDEP is the unexplained death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy.
Risk Factors For SUDEP
Estimates of SUDEP risk vary, but general population studies suggests that each year there is about 1 case of SUDEP for every 1,000 people with epilepsy. For some, this risk can be considerably higher, depending on several factors identified by researchers such as:
- Uncontrolled or frequent seizures.
- Generalized convulsive (tonic-clonic or “grand mal”) seizures.
Other possible risk factors may include the following:
- Long duration of epilepsy and young age when seizures started.
- Not taking antiepileptic medication regularly as prescribed.
- Alcohol use.
Steps To Reduce The Risk Of SUDEP
If you have epilepsy, ask your doctor to discuss your risk of SUDEP with you. The first and most important step to reduce your risk of SUDEP is to regularly take your seizure medication as prescribed. If you are taking seizure medication and are still having seizures, discuss options for adjusting the medication with your doctor. If seizures continue, consider consulting an epilepsy specialist, if you are not already seeing a specialist. Other possible steps to reduce the risk of SUDEP might include:
- Avoid seizure triggers, if these are known.
- Avoid excessive alcohol use.
- Avoid sleep deprivation.
If you have uncontrolled epilepsy, talk with your doctor about other possible ways to reduce your risk of SUDEP. If necessary, other ways to reduce risk might include having adults in the household trained in first aid for epilepsy seizures.
How Do I Talk To My Doctor About SUDEP?
When you decide to talk with your doctor about SUDEP, here are possible questions to ask:
- What is my risk for SUDEP?
- If my risk of SUDEP is increased, what can I do to reduce my risk?
- What should I do if I forget to take my anti-epileptic drug (AED)?
- What steps should I take if it is decided to change my seizure medication?
- What medications provide the best seizure control for me?
- Are there any specific activities I should avoid?
- What instructions should I give my family and friends if I have a seizure?