Epilepsy Talk

SUDEP — Who’s at Risk? | October 15, 2015

When people with epilepsy are told about Sudden Unexpected Death, they naturally wonder “Will it happen to me?” But actually, the chances of dying from SUDEP are remote.

Though it is still difficult to know exactly how many people with epilepsy die each year due to SUDEP, estimates range from 7–17% (according to the National Institute of Health) and perhaps 50% among patients with refractory epilepsy.

(NOTE: One possible reason for this disparity is that often, autopsies are not performed.)

Most of us live a full life span and should not spend time worrying about potential epilepsy-related catastrophes. But people who live with epilepsy or with a loved one who has epilepsy should be aware that epilepsy occasionally can be fatal.

This uncomfortable truth is often hidden or ignored because it is relatively rare and so hard to discuss. Some doctors argue: don’t inform patients, because it will be too frightening.

So just like epilepsy itself, people don’t want to think — no less talk — about SUDEP.

No one really knows what causes Sudden Unexpected Death. (Making its name especially appropriate!) But, there are potential factors associated with epilepsy and seizures that may increase the risk of early death:

Irregularities in heart rhythm, breathing dysfunction, disturbance in brain circulation, and seizure-induced hormones along with metabolic changes have all been suggested as potential causes. Yet, it is not known what role seizures play in SUDEP.

Some people may be more at risk than others, especially young men aged 20-40 with tonic-clonic (grand mal) seizures that are not fully controlled by medication.

Those on multiple drugs appeared to have a higher SUDEP rate. Whether this reflects a risk associated with antiepileptic drugs or rather the presence of more severe epilepsy, remains uncertain.

However, it’s interesting to note that, most victims of SUDEP are found to have sub-therapeutic blood levels of anti-epileptic drugs in their systems.

The most common criteria used to determine whether a death is due to SUDEP are:

A person has recurrent, unprovoked seizures…

They die unexpectedly while in a reasonable state of health…

The death occurs suddenly, during normal activity (often during sleep)…

Note: Sleeping on your stomach may increase your risk of dying from SUDEP…

An obvious cause of death can’t be determined at autopsy (if there was one)…

The death is not the direct result of status epilepticus.

“What can I do to lower the risk?”

Try your best to control your epilepsy.

But you don’t need me to tell you that!

There’s no guarantee, but seeing the best doctor available, on a regular basis is mandatory. Along with taking your meds regularly and avoiding sudden drug withdrawal…maintaining regular and adequate sleep patterns…exercising…eating nutritious meals…and learning to manage stress.

 With some people, the Ketogenic Diet, a Vagus Nerve Stimulator or surgery are used to treat uncontrollable seizures when medication doesn’t work. But realistically, it’s often not possible to stop seizures fully.

There’s no answer. There’s no magic wand. Just the heartbreaking reality that SUDEP tends to strike young, otherwise healthy people. Those who should have had all of their life in front of them.

Research and progress…

Scientists are trying to find medicines, other than anti-epileptic drugs, that will reduce the risk for SUDEP. But, none of these are ready for use outside of clinical trials.

Some drugs may stabilize heart rhythm. Others, for example, the antidepressant Paxil can stimulate breathing in some situations.

 And here’s a very cool piece of news: a trial of omega-3-fatty acids, found in fish oils, is being undertaken to evaluate protection against SUDEP!

Further research will provide better clues to genetic and environmental causes, prevalence and possible treatments. In fact there’s a gene screening test in the works right now to identify molecular triggers.

However, sudden unexpected death is still a mystery as to cause, effect and prevention. And those who have a family member with SUDEP should not feel that they could have prevented it. None of us can.

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  1. Lily, I lost your post. But you know, everyone’s body is different.

    Since Gabapentin works on the nervous system, that may be the reason for your anxiety.


    Comment by Phylis Feiner Johnson — October 15, 2015 @ 9:59 AM

  2. Thanks for the info, it is all helpful with my youngest son. He is 29 now and had controlled seizures up until 3 years ago. With change in insurance plan and not being able to afford the med he was on for over 10 years he had to go to the “generic” that caused him to start having seizures again. Well 3 years later and on his 4th combination of 2 to 3 med’s he is still having 1 to 2 seizures every 3 weeks or so. Does not sound bad except he has had some where he lost his bladder and bowels during some of his seizures and one real bad one where he quit breathing and he turned white and his lips turned blue. We thought for sure he died, after 2 or 3 minutes he came back gasping for his breath. He told us he went to heaven but God let him come back, really scary but thank for story. Any questions or response please email me , thanks!


    Comment by Buddy Dowlen — October 18, 2015 @ 7:07 AM

  3. Status epilepticus (a life-threatening neurologic disorder that is essentially an acute, prolonged epileptic crisis) is more than scary. And I’m glad he came back to you.

    Becoming incontinent is not as unusual as you would think. (Sigh.)

    And here are some organizations that can assist you with prescription drug plans.

    FREE Prescription Drugs


    I hope this is a help.


    Comment by Phylis Feiner Johnson — October 18, 2015 @ 9:25 AM

  4. When I was 3months old ,I almost died twice but came back. so think that some of the people that have epilepsy think they will die after one. they need to stop thiking about it .and go on with life.


    Comment by michele metzger — March 15, 2016 @ 2:25 PM

  5. A good, poignant observation, Michele.


    Comment by Phylis Feiner Johnson — March 15, 2016 @ 4:26 PM

  6. Great article about SUDEP Phylis, I enjoy reading your informative blogs.


    Comment by jennyme3062015 — May 16, 2016 @ 7:45 PM

  7. THANKS Jenny!


    Comment by Phylis Feiner Johnson — May 17, 2016 @ 6:40 AM

  8. I recently had status epilepticus again. I had it 21 years ago, when I was pronounced dead and put into a coma. This time I had Todd’s Paralysis. The EMTs thought it was a stroke. I was so scared, but I’m doing better now on Onfi.


    Comment by Mary Ellen Gambon — October 18, 2016 @ 6:49 PM

  9. I also was put into an induced coma to control status. But after a few days of life support, everything came out ok.

    Glad to hear you’re doing better now on Onfi.


    Comment by Phylis Feiner Johnson — October 18, 2016 @ 7:43 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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