What Increases the Risk of SUDEP? Understanding the Main Risk Factors

Sudden Unexpected Death in Epilepsy (SUDEP) is a rare but serious risk for people living with epilepsy. It refers to the sudden and unexplained death of someone with epilepsy where no other cause is found after a post-mortem examination.

While SUDEP is uncommon, research has identified several factors that are known to increase the risk of SUDEP. Understanding these risk factors can help people with epilepsy, as well as families and carers, have informed conversations with healthcare professionals and take steps to reduce risk where possible.

What is SUDEP?

SUDEP stands for Sudden Unexpected Death in Epilepsy. It occurs when a person with epilepsy dies suddenly and no clear cause of death can be identified, even after investigation.

In the UK, it is estimated that around 600 people die from SUDEP each year. Although the exact cause is not fully understood, SUDEP is thought to be linked to changes in breathing, heart rhythm, or brain function during or after a seizure.

What Increases the Risk of SUDEP?

Research shows that SUDEP risk is influenced by a combination of medical, behavioural, and lifestyle factors. The most widely recognised risk factors include the following.

1. Poorly Controlled Seizures

The strongest known risk factor for SUDEP is having frequent seizures, particularly generalised tonic-clonic seizures (sometimes called convulsive seizures).

People whose seizures are not well controlled are at a higher risk compared to those who are seizure-free or experience seizures less often. Reducing seizure frequency is considered one of the most effective ways to lower SUDEP risk.

2. Not Taking Epilepsy Medication as Prescribed

Missing doses, taking medication inconsistently, or stopping epilepsy medication without medical advice can increase seizure frequency and severity. This, in turn, increases the risk of SUDEP.

Medication adherence plays a critical role in seizure control. Even occasional missed doses can have an impact for some people.

3. Seizures During Sleep

Night-time seizures are associated with a higher risk of SUDEP, particularly when seizures happen unwitnessed. This may be because breathing or heart rhythm changes during sleep go unnoticed and untreated.

For some individuals, additional monitoring or support during sleep may be discussed with a healthcare professional.

4. Long Duration of Epilepsy

People who have lived with epilepsy for many years may have a slightly increased risk of SUDEP, especially if seizures have remained poorly controlled over time.

This does not mean SUDEP is inevitable — many people live long lives with epilepsy — but it highlights the importance of ongoing review and management.

5. Lifestyle Factors and Seizure Triggers

Certain lifestyle factors can indirectly increase SUDEP risk by making seizures more likely. These include:

  • Excessive alcohol consumption

  • Lack of sleep

  • High levels of stress

  • Ignoring known seizure triggers

Managing these factors can help support better seizure control overall.

Important: SUDEP remains rare. Having one or more risk factors does not mean it will happen. Risk varies between individuals, and many people with epilepsy will never experience SUDEP.

How Can the Risk of SUDEP Be Reduced?

Although SUDEP cannot always be prevented, steps that may help reduce risk include:

  • Taking epilepsy medication exactly as prescribed

  • Attending regular reviews with a GP or epilepsy specialist

  • Reporting ongoing seizures or side effects promptly

  • Identifying and managing personal seizure triggers

  • Maintaining healthy sleep and lifestyle habits

Open conversations with healthcare professionals about SUDEP risk are encouraged, particularly for people with ongoing seizures.

Supporting Medication Adherence

For many people with epilepsy, taking medication consistently is essential for reducing seizures and managing risk. However, sticking to a medication routine can be challenging, especially when multiple doses are required or daily routines change.

YOURmeds is a medication management system designed to help people follow their prescribed medication schedules more reliably. It combines smart medication packs with optional digital support that can involve trusted family members or carers.

By helping to reduce missed doses and confusion around medication timing, systems like YOURmeds can support people in managing their treatment more consistently.

👉 Learn more about how YOURmeds supports medication management

SUDEP Awareness

SUDEP awareness initiatives encourage people with epilepsy, families, and healthcare professionals to talk openly about risk factors and prevention. Awareness helps ensure risks are recognised early and reviewed regularly as part of epilepsy care.

This article is for general information only and does not replace medical advice. Always speak to a healthcare professional about epilepsy management and SUDEP risk.

Scroll to Top