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.
About the author
Phylis Feiner Johnson has been a professional copywriter for 30 years. She also spent 20 years with epilepsy. She writes from the heart to increase education, awareness and funding for epilepsy research. For further information, contact The Epilepsy Foundation of Eastern Pennsylvania at http://www.efepa.org/ and please make a contribution to become an advocate, too.