SUDEP - The Thing We Don’t Talk About But We Should
SUDEP is probably one of the things that scares me the most as a mom to a daughter with epilepsy. And I know the same can be said for many other people who have a loved one with epilepsy, or have epilepsy themselves.
It’s because of this fear that many of us never discuss SUDEP. But I think that needs to change, because unfortunately, it is a serious issue and it’s something that we should be informed about.
So let’s talk about SUDEP.
What is SUDEP?
SUDEP is an abbreviation that stands for “sudden, unexpected death in epilepsy”, and it’s the term given to a death that seems to be caused by epilepsy but isn’t otherwise associated with any known causes of seizure-related death.
For instance, known causes of seizure related death are things like: status epilepticus, drowning, trauma, etc. So SUDEP refers to deaths that we’re related to any of these things.
In short, it’s a mystery.
How Common Is SUDEP?
Sadly, over 1 in 1,000 people with epilepsy pass away from SUDEP each year. And this makes it the leading cause of death for those with uncontrolled seizures. So it’s far more common than anyone would like it to be.
What Are Risk Factors For SUDEP?
Other than those with uncontrolled seizures; SUDEP is more common among patients who have had seizures since they were young, and have had seizures for many years. And in particular, it seems to happen the most often to people between 21 and 40 years old.
There are a few other risk factors that seem to be more in the person’s control, such as…
Alcohol consumption
Experiencing triggers
And missed doses of medication
And finally, people that have uncontrolled tonic-clonics are said to be at the most risk for SUDEP.
While on the other hand, SUDEP is less common among epileptics who suffer from absence and/or myoclonic seizures.
What Causes SUDEP?
Breathing - Seizures can cause a person to stop breathing for a short period of time, and the longer they go without oxygen, the more danger they’re in. Seizures can also cause obstruction to airways that make it impossible to breathe at all. So suffocation, or lack of air, is a potential cause of SUDEP.
Heart Issues - Seizures can cause abnormal heart rhythms and sometimes even cardiac arrest, so this is another potential cause.
Brain Function - Both of the previously mentioned causes (breathing and heart issues) could be caused by changes in brain function brought on by a seizure.
Or, the cause for SUDEP could even be something that we don’t currently have information on.
But it’s especially difficult to narrow down what causes SUDEP because it often happens when the person is sleeping, so typically, nobody was around to witness it.
Can You Prevent SUDEP?
Because so much research is needed to fully understand SUDEP, we don’t really know of all the ways to prevent it. But researchers and experts do have a few suggestions that I’ll share with you here.
Keeping up with your medications is vital, because as I mentioned earlier, SUDEP is the leading cause of death for those with uncontrolled seizures. And furthermore, missing a dose of medication is known as a potential trigger for SUDEP.
Avoiding well known seizure triggers such as sleep deprivation and dehydration is another prevention method.
But avoiding personal seizure triggers is also important. So if your seizures are triggered by flashing lights, avoid them. If they’re triggered by certain foods, avoid those foods. Etc… (If you’d like to learn about more seizure triggers then please read this article.)
More research is needed to decide if the following methods are effective at preventing SUDEP; but things like anti-suffocation pillows could help reduce that risk at least, and having someone sleeping in the room with a person with epilepsy could also reduce risks somewhat. As could devices that alert others to a person having a seizure in their sleep.
Why We Need To Talk More About SUDEP
I think it’s important that more of us start to talk about SUDEP, because the alarming truth is, many people with epilepsy don’t even know what SUDEP is. And this is dangerous, because it means they don’t fully realize the danger of their diagnosis and may not take their self care as seriously as they need to in order to stay safe.
I was yet another person that didn’t know what SUDEP was, and even after my daughter’s diagnosis, none of the doctor’s mentioned it. I didn’t find out that it existed until I was doing my own research online.
This video explains the need for communication about SUDEP really well, so I’d love it if you guys gave it a watch. It was made by a family that lost their daughter to SUDEP, and they talk about how they wished they would’ve known about it beforehand because they would’ve taken more steps to try and prevent it.
Conclusion
So much of SUDEP is still a mystery, but my hope is that someday it won’t be. I hope that eventually the research will uncover the reason why it happens, so that we can find a way to prevent it and lessen the amount of epilepsy-related deaths in the world.
But until then, it’s still a risk that every person with epilepsy (as well as their loved ones) deserve to be informed of. And I hope that this article has helped with that, in some small way. Because it was a tough one to write, maybe even the toughest so far.
Sources -
https://www.epilepsy.com/complications-risks/early-death-sudep/sudep-faq
https://www.epilepsy.com/complications-risks/early-death-sudep
https://www.cdc.gov/epilepsy/communications/features/sudep.htm
https://www.ncbi.nlm.nih.gov/books/NBK559104/
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