Epilepsy Talk

SUDEP – Who’s At Risk? | June 8, 2011


This article is written in memory of someone who died way before his time.  Although I almost died from seizures — a heart attack, coma and life support “saved” me.  I was 56.

He didn’t have that luxury. He died suddenly at the age of 17. Even though he called himself “positive man.”

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. Like “positive man,” they seem almost random. Like a stray bullet ricocheting off a wall.

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)…

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 you can do…

“What can I do to lower the risk?” Try your best to control your epilepsy.

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.

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

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, like “positive man.” 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.

Another article of interest:

Is SUDEP Risk Potentially Treatable? http://www.sciencedaily.com/releases/2013/12/131209084209.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fepilepsy+%28ScienceDaily%3A+Health+%26+Medicine+News+–+Epilepsy+Research%29

Resources:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC320690/

http://my.epilepsy.com/epilepsy/sudep_risk

http://www.patient.co.uk/health/Epilepsy-and-Sudden-Unexpected-Death-(SUDEP).htm

http://www.epilepsychicago.org/epilepsy-facts/sudep/

http://www.epilepsyfoundation.org/about/SUDEP/faqs.cfm

http://www.cureepilepsy.org/about/sudep_faq.asp

http://www.sciencemag.org/content/321/5885/31.summary

 


13 Comments »

  1. I thought only children got SUPED.

    Comment by ruth brown — June 8, 2011 @ 1:55 PM

  2. I wanted to see to it changed my gravatar. I put one in.

    Comment by ruth brown — June 8, 2011 @ 2:23 PM

  3. It was not changed by WordPress. I changed it at WordPress, what happened?

    Comment by ruth brown — June 8, 2011 @ 2:24 PM

  4. I followed the directions that WordPress has. Frustating. We are getting off of the subject.

    SUDEF, I have always heard is only in children. Am I right or wrong?

    Comment by ruth brown — June 8, 2011 @ 2:46 PM

  5. a trial of omega-3-fatty acids, found in fish oils, is being undertaken to evaluate protection against SUDEP!

    I’m sorry to sound like a sceptic, but my question is:
    How do they know what WILL protect SUDEP (if anything) when (1) they don’t know what the main or most common cause is.
    (2) The only thing they do know is that it’s random with multiple causes and can be different in every case.
    (3) The cause can only be found after the fact.

    Comment by Mike Farnam — June 8, 2011 @ 4:29 PM

  6. .

    I have found that most people DO NOT truly understand the concept that people do die from epilepsy both by direct causes and or by an accident/tragedy.

    I had a seizure while driving and crashed and was also in the ICU on another occasion on life support.

    I was on Dilantin for about 9 years fully compliant with my medications.

    I was starting to have break threw seizures and my Dilantin level kept showing as low but I was taking my medications as prescribed the same way I had always done.

    Something was wrong and very different and my doctors and the hospital labeled me as non-compliant and continually intervened by supplementing the Dilantin threw an IV.

    i was showing serious signs of stress and my behavior became erratic and hostile.

    Finally I had the big one, a seizure that lasted on and off, but consistently only moments apart for over an hour.

    The ambulance medics were unable to put in an IV line and unable to stabilize me.

    Arriving at the hospital in full convolution mode an anesthesiologist medicated me with the norm, then some more, and some more, then a boat load of Dilantin which sent me into cardiac arrest, causing my heart and respiration to fail.

    I was overdosed by an inadequate uneducated ER staff and eventually was moved to another hospital to spend another week inpatient on the cardiac unit.

    My point to this is that I am extremal lucky (according to my current Nero.) to be alive. My Nero. has also informed me that current studies indicated that over an extended period of time Dilantin can be mal-absorbed causing low blood levels. It is just passed threw along with other waists.

    “THEY” almost killed me but, it would have been labeled SUDEP.

    Thanks for the information!

    Have a pain and seizure free day!

    Comment by illegallyinsanegirl — June 8, 2011 @ 6:04 PM

    • Sigh. Where to begin…

      1. Yes, there are MANY ways you can die if you have epilepsy: car accident, drowning, cracking your head, coma, respiratory failure, etc. However they do not “qualify” as SUDEP which is still a real mystery in terms of origin and solution.

      2. The idiots should have checked the levels of Dilantin in your bloodstream — with a simple blood test — instead of being rude and abusive.

      3. I had the same hospital experience. A cascade of seizures, big IV of Dilantin and cardiac arrest, then another round of cascading seizures. This time they did a different infusion (I don’t know what, I wasn’t there for the festivities), put me in a coma and on life support for 5 days.

      In my case, my neurologist and the resident on hand saved my life.

      In your case, it would not have been SUDEP. It would have been malpractice…or at the very least, horrible human error of the most devastating kind.

      I’m glad you’re still here with us.

      By the way, when you have time, look at “Dilantin — Hero or Horror?”

      http://epilepsytalk.com/2010/10/06/dilantin-%e2%80%93-hero-or-horror/

      Comment by Phylis Feiner Johnson — June 8, 2011 @ 8:16 PM

  7. Any port in a storm. I guess it’s a crap shoot like everything else. However, fish oil is supposed to be good for the heart and one of the theoretical problems leading to SUDEP is heart/cardiac problems, I guess researchers are taking a gamble on that. (Even though it’s only one possible factor.)

    Here’s what the Mayo Clinic says:

    “There is evidence from multiple studies supporting intake of recommended amounts of DHA and EPA in the form of dietary fish or fish oil supplements lowers triglycerides, reduces the risk of death, heart attack, dangerous abnormal heart rhythms, and strokes in people with known cardiovascular disease, slows the buildup of atherosclerotic plaques (“hardening of the arteries”), and lowers blood pressure slightly.”

    http://www.mayoclinic.com/health/fish-oil/NS_patient-fishoil

    Comment by Phylis Feiner Johnson — June 8, 2011 @ 6:38 PM

  8. Thank you, Phylis.

    Comment by ruth brown — June 9, 2011 @ 2:07 AM

  9. Authopsies are a really good thing. They let they let the medical team learn from experience and actually see what did or didnt went wrong with, the patient, and tell the family what actually happened at and around the time of death, for good and for bad. They let medical all medica team and students get used to the human body, learn from it, to see, study, smell and touch it, and become dextrous in managing it, to know and study what happens when things get the wrong ways and learn from it. We cant harm much more a death body! And we get to know so much stuff, it was ment to get buried! It’s there where we can start to learn to fix some things (Plus we can actually make him smile and look better before saying goodbye)

    Comment by Gerardo Gutierrez — March 1, 2012 @ 8:57 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've 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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