SUDEP in epilepsy

If you or someone you know lives with epilepsy, it is important to know about SUDEP. Sudden Unexpected Death in Epilepsy is a significant‍ cause of death in people who have a seizure disorder. Knowing about SUDEP in epilepsy, why it happens and things that may reduce the risk, can help you to feel more in control.

SUDEP definition

So, what is SUDEP? The International League Against Epilepsy  defines SUDEP as a “sudden, unexpected death in a person with epilepsy, with or without evidence for a seizure preceding the death, in which there is no evidence of other disease, injury, or drowning that caused the death”.

SUDEP is rare. About one in every thousand adults with epilepsy die from SUDEP every year, and one in 4,500 children with epilepsy. 

SUDEP can happen to people with all kinds of epilepsy, although it may be more common among certain groups:

• People aged between 20 and 45
• People who primarily have tonic-clonic seizures
• People who don't have easy access to medical treatment
• People who’ve been seen in an epilepsy center or who live in a residential care facility
• People whose epilepsy started when they were children
• People with refractory epilepsy 
• There are also other groups who may be at risk

SUDEP: The tragic story of actor Cameron Boyce

Why does SUDEP in epilepsy happen?

Right now, there is still not enough definitive evidence to explain why SUDEP in epilepsy happens, and more research is needed. It may be caused by a combination of things. 

There are a number of factors that scientists believe may cause it:

• Breathing problems

When people have seizures, it may stop them from breathing like normal. This may lead to dangerously low levels of oxygen in their bloodstream.

• Heart problems

Seizures may cause people to have unusual heart rhythms, which may mean their hearts stop working.  

• Suffocation

Researchers have noticed that people who die from SUDEP are often found lying face down. Some think they may have suffocated in their bedding, while others believe their breathing may stop after a seizure and they don’t fully wake up to start breathing again - even when nothing is blocking their airway.

• PGES (postictal generalized EEG suppression)

PGES is when there is reduced brain activity that may happen after a tonic-clonic seizure. Some scientists suggest that this reduced brain activity could be linked to SUDEP.

Possible warning signs of SUDEP

Because scientists don't know exactly why SUDEP happens, it is not really possible to identify specific warning signs. However, researchers have attempted to list possible ‘red flags’ by studying case histories of people who passed away from SUDEP. These may include:

• An increase in the number of seizures in the previous year (an increase in generalized tonic clonic seizures is particularly associated with SUDEP)
• Having drug resistant epilepsy, which is when seizures continue happening despite you trying two or more anti epilepsy medications
• Changing anti seizure medicines three times or more in the past year
• Not taking anti seizure medication, or taking multiple seizure medications (more than one or two at a time)
• Alcohol misuse or drug addiction

You can monitor the number of seizures you have and record all medication you're taking using the Epsy app.

Preventing SUDEP

The CDC suggests the following ways to help with preventing SUDEP:

• Talk to your doctor about the risk of SUDEP and how you can reduce your risk
• Consistently taking anti-seizure medicine as prescribed by your doctor
• Avoiding seizure triggers if you know what yours are
• Training people you live with in seizure first aid

Some doctors and researchers have also suggested utilizing seizure pillows, wearing digitally connected wristbands that alert other people if your heart rate changes significantly, or sharing a room with someone who can watch you if you are having nighttime seizures. These measures aren’t yet recommended by the CDC, so if you have any questions about preventing SUDEP, speak to your doctor first.

Your concerns about SUDEP in epilepsy

If you have any doubts about your risk of SUDEP, warning signs of SUDEP or how to prevent it from happening, speak with your doctor. They can advise you on ways to manage the risk and provide you with more information.