Sudden Unexpected Death in Epilepsy (SUDEP) is the "sudden unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in an individual with epilepsy, with or without evidence of a seizure and excluding documented status epilepticus where post-mortem examination does not reveal a cause for death".SUDEP is uncommon. Between 21-44 people are believed to die from SUDEP each year in Ireland. SUDEP is connected to seizures but what exactly causes it is unknown. The most likely explanation is that a seizure interferes with the part of the brain that controls breathing or the heart.
Who is most at risk?
The risk of SUDEP varies from low to very low, but, for a small number of people the risk may be higher. It is important to understand your epilepsy and how best to manage it. The most significant risk factor for SUDEP is having active seizures (particularly tonic-clonic seizures). Therefore the better epilepsy is controlled, the more the risk of SUDEP is reduced.
Keep perspective on risk
It is important to put safety risks in perspective. The overall SUDEP risk relates to frequency of seizures and varies from up to 1:100 (for those at highest risk) to a general risk of about 1:1000 (similar to the risk of smoking 10 cigarettes a day). SUDEP can affect any age group.
Summary of risk factors for SUDEP:
- Having frequent tonic clonic seizures;
- Having sleep seizures;
- Having seizures when alone;
- Untreated epilepsy;
- Abrupt changes in epilepsy medication;
- Not taking medication as prescribed.
Summary of advice to reduce your risk:
- Know your triggers and if they can be avoided or reduced;
- If you aren’t sure, check what type of epilepsy you have;
- If you are not seizure-free, seek a referral to a neurologist;
- Take your medication and never change or stop taking it without your doctor or epilepsy specialist nurse’s guidance;
- Let your doctor know about the number, frequency and type of seizures and any medication side effects;
- Ask witnesses to document your seizures or take a video clip; use the Epilepsy Ireland app
- For sleep seizures use a seizure alarm;
- Raise SUDEP questions with consultant or specialist nurse.
Advice for Carers to reduce the risk of SUDEP:
- Consider using seizure detection alarms and monitoring;
- Although there is little research on ventilated pillows and SUDEP many people opt to use them;
- Stay with the person after a seizure has finished and check their breathing is regular and their colour is back to normal;
- Put them into the recovery position when the seizure is over;
- Follow any Care Plan that may have been drawn up with the epilepsy team exactly. It will state what is to be done and when and the Care Plan will be tailored to the person’s epilepsy needs.