SUDEP Information for Spouses or Partners of People with Epilepsy
For some people living with epilepsy, the risk of Sudden Unexpected Death in Epilepsy (SUDEP) is an important concern. SUDEP refers to such deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. Often SUDEP occurs with evidence of an associated seizure.1
Continued education of people with epilepsy and their loved ones is very important in reducing the risk of SUDEP-related mortality. Epilepsy research overall has made substantial contributions leading to developing more effective risk reduction methods for SUDEP.
If your loved one has epilepsy, ask your loved one’s doctor about SUDEP. The first and most important step to reduce their risk of SUDEP is to ensure they are regularly taking their seizure medication as prescribed. If they are taking seizure medication and still have seizures, discuss options for adjusting the medication with their doctor. If seizures continue, consider consulting an epilepsy specialist, if your loved one is not already seeing a specialist.
Other possible steps to reduce the risk of SUDEP might include the following:
- Avoid seizure triggers, if these are known.2 Read more information about seizure triggers.
- Avoid excessive alcohol use.1
- Avoid sleep deprivation.1
If your loved one has uncontrolled epilepsy, talk with their doctor about other possible ways to reduce their risk of SUDEP. If necessary and only if directed by the doctor, other ways to reduce their risk might include having adults in the household trained in first aid for epilepsy seizures.
When you decide to talk with your loved one’s doctor about SUDEP, possible questions to ask include the following:
- What risk does my loved one have for SUDEP?
- If their risk for SUDEP is increased, what can I do to reduce their risk?
- What should I do if my loved one forgets to take their anti-epileptic drug (AED)?
- What steps should I take if it is decided to change my loved one’s seizure medication?
- What medications provide the best seizure control for my loved one?
- Are there any specific activities my loved one should avoid?
- What instructions should I give family and friends if my loved one has a seizure?
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Please visit the following Web sites for more information and resources related to SUDEP:
- Epilepsy Foundation [PDF - 205KB]
- Citizens United for Research in Epilepsy (CURE)
- SUDEP Aware
- Epilepsy Bereaved
- Patient UK (United Kingdom)
- Epilepsy Action (United Kingdom)
- Support Groups
- Power Point Presentation
- SUDEP Brochures
- SUDEP Information for a Person Living with Epilepsy
- SUDEP Information for Parents of Children with Epilepsy
- SUDEP Information for Spouses or Partners of People with Epilepsy
- Devinsky O. Sudden unexpected death in epilepsy. New Engl J Med. 2011;365:1801-11.
- Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-31.
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