Epilepsy Talk

SUDEP — Who’s at Risk? | August 18, 2018

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 with an 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. Hmm. I wonder if the stats showing it mostly strikes younger otherwise healthy folks could be the result of, if it struck an older person with lots of other ailments, it would be (statistically) written off to one of those. E.g., “Poor John. He had a heart condition for years. That must have been what got him in his sleep.” Maybe it only gets *called* SUDEP in young relatively healthy folks because they don’t have any other pre-formed easy answer to use.
    We all know that getting research money for anything to do with epilepsy can be a stretch.


    Comment by paleobird — August 18, 2018 @ 11:12 AM

    • One of the problems is that they don’t take time to do autopsies, so we never know the complete truth.

      50 years ago, it was pretty easy to find out the cause of a loved one’s death.

      Not so anymore.

      An investigation published by ProPublica shows that hospital autopsies have become a rarity…

      “A half-century ago, an autopsy would have been routine. Autopsies, sometimes called the ultimate medical audit, were an integral part of American health care, performed on roughly half of all patients who died in hospitals.

      Today, data from the Centers for Disease Control and Prevention show, they are conducted on about 5 percent of such patients.”

      Even sudden unexpected deaths do not trigger postmortem reviews.

      Hospitals are not required to offer or perform autopsies. Insurers don’t pay for them.

      Some facilities and doctors shy away from them, fearing they may reveal malpractice. The downward trend is well-known — it’s been studied for years.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 18, 2018 @ 12:57 PM

  2. I always wondered if SUDEP is just a term to allow people with epilepsy remain in the dark. needless to say being in a GRAND MAL seizure is nothing but darkness. Compare that thought to a possible diagnosis as SECDEP Sudden Explain Causes of Death in EPilepsy,, that can happen from food & drug toxins found in the drugs, foods, drinks & non-food & non-drug items we use daily. Like SUDEP nobody will ever talk about this possible REALITY that happens more than people care to know about or report, as deaths from SECDEP tends to happen more than SUDEP, when every 18 minutes, someone id dying from a toxic reaction in a persons blood brain barrier & their metabolism / brain chemistry unbalances which a seizure can result from those toxins. All that said,, I believe both SECDEP & SUDEP can be controled better from herbal options like VELARIAN, LOBELIA, BACOPA, TURMERIC, & others, with very little side affects, compared to KEPPRA, LAMICTAL, PHENOBARBITAL, DILANTIN, VIMPAT, TEGRETOL, & that list goes one, with many side affects & possible more seizures too, as a VNS is not always the answer either, when it can create MORE seizures instead of 0 seizures, and you still need the AED’s with a VNS. So who wants to show any of us with epilepsy / seizure conditions some real light to cure all seizures ? They have them but it would not benefit them to make any of us seizure free for life. The doctors in ISRAEL seems to look at root causes & not to treat symptoms of any condition. KATHLEENKENNEDY@militarytimes.com had an article from Feb2007 that worth reading where TBI was being cured, that could had caused MANY brain conditions.

    Liked by 1 person

    Comment by CD — August 18, 2018 @ 11:19 AM

    • Thanks, CD

      And yes, I agree. SUDEP is often an “excuse” to cover up what could be many kinds of epilepsy deaths.


      Comment by Phylis Feiner Johnson — August 18, 2018 @ 12:58 PM

  3. Phylis Feiner Johnson, from your way of thinking, can people who have experienced Status Epilepticus be more susceptible to SUDEP than those who have not? I would welcome your perspective.


    Comment by Jeffrey Liakos — August 18, 2018 @ 5:14 PM

    • My estimation would be yes.


      Comment by Phylis Feiner Johnson — August 18, 2018 @ 8:31 PM

      • Phylis Feiner Johnson, I remember telling you about my first (and hopefully only) time experiencing Status Epilepticus in 2015. Even now, I am still disturbed by this event. Not disturbed enough to have nightmares or need professional help, however, it still causes me worry at times.


        Comment by Jeffrey Liakos — August 19, 2018 @ 1:21 PM

  4. I agree with the comments above, here is another issue i find, if “No one really knows what causes Sudden Unexpected Death. (Making its name especially appropriate!)” , then how can you make a medicine for something that no one knows about? Further more, how can you test such a medicine? 🙂

    Like CD mentioned, drug toxins can be a very important factor in all this. The chemicals chemists are coming up with can be more powerful than even the devils weed, datura. That’s why i told my doc before we start on multiple medications i want to go through each one, one at a time. I for one never wanted to be on any drug for the so called rest of my life. Just the thought of it seems so wrong, The chemicals that make up our bodies and the way they interact with each other is something only a god could of come up with. And to try and mess with that balance is a cause for trouble in my opinion. And some problems may only start to happen after a longer period of time than the clinic trials last.

    What happens during a seizure, “In adults and children, most complex partial and generalized tonic–clonic seizures cause an increase in heart rate (2–5). Blumhardt et al. reported that 92% of 26 patients with temporal lobe seizures recorded by ambulatory EEG–EKG monitoring were associated with a dominant increase in heart rate (2).” (google). Maybe a weak heart can’t take the increase and maybe the drug interactions stifles the heart. One good thing is that most the time it happens during sleep, that is the way i want to go, quick. Maybe they die from a bad dream, a dream of having epilepsy.


    Comment by Zolt — August 19, 2018 @ 11:51 AM

  5. Phylis Feiner Johnson, SUDEP is something that we need to take seriously. Just my thoughts.


    Comment by Jeffrey Liakos — August 19, 2018 @ 1:30 PM

  6. Thanks especially for this column, Phyllis. But what about the new monitors, especially the wrist watch type? How reliable are they?


    Comment by Martha — August 19, 2018 @ 3:08 PM

    • Here’s a run down on my smart watch favorites:

      NEW! Apple Seizalarm — A user-friendly iPhone and Apple Watch app which allow those with epilepsy and other seizure disorders to alert emergency contacts automatically when seizure-like motion is detected or manually if they need immediate help or think they might need help soon. Detects seizure-like motion, requests immediate help, seizure monitoring control, GPS location tracking, and event log tracking. http://seizalarm.com/

      Embrace — Created to track your activity, stress and overall body balance, enabling people who live with Epilepsy to get an alert when an unusual event happens such as a convulsive seizure, warning them and their loved ones. https://www.empatica.com/product-embrace

      The SmartWatch — A motion detecting and alerting wristwatch that can detect seizures and alert caregivers within seven to 10 seconds. http://www.smart-monitor.com/
      For details and pricing information, please call 1-888-334-5045.


      Comment by Phylis Feiner Johnson — August 19, 2018 @ 5:02 PM

  7. Phylis Feiner Johnson, SUDEP is a disturbing thing to imagine. For people whose Epilepsy is well managed, is SUDEP still a valid concern or not really?


    Comment by Jeffrey Liakos — August 19, 2018 @ 5:28 PM

    • SUDEP is very real…for anyone who has epilepsy. But, that being said, it is also very rare.


      Comment by Phylis Feiner Johnson — August 19, 2018 @ 9:35 PM

      • Phylis Feiner Johnson, I know that there is a difference between SUDEP and Status Epilepticus. However, when I had my situation in 2015, the memory of that has stayed with me. Obviously, as much as I wish I could have prevented or predicted it, I am still disturbed by it to this day.


        Comment by Jeffrey Liakos — August 20, 2018 @ 4:02 PM

  8. Reblogged this on Karen's mixed up mind.


    Comment by karebear1967 — August 20, 2018 @ 9:20 AM

  9. I found out about SUDEP years ago at the Mayo Clinic, because one of their Specialists is doing a constant study on it. It sounded scarey to me, that’s for sure. I even had a piano teacher who had refractable Epilepsy, like I do, and one day he was found dead while taking a bath. With unusual heart beat, I might of had a close call, a few weeks ago! I had some monitoring done at Johns Hopkins and they said that I have both Epileptic and Non-Epileptic seizures. But they wanted to try a medication that I had already tried, Vimpat, and it had side effects that weren’t nice, but I couldn’t remember what they were. So Hopkins went ahead and tried it. But about 2 days after I got home, my sister had to drive me to a local emergency room, because by the time we got there my heart beat was about 200 over 103! Thankfully they were able to calm my heart down with an I.V. But Hopkins wanted me to stay on the Vimpat for a few more days. They kept in touch though. My sister even asked one of their neurologists something like “Since the brain runs the body, why is a seizure caused by irregular heartbeat or flow of oxygen considered Non-Epileptic?” He said to her over the phone “Good question. We don’t know.” After about 6 days I had my sister, since by that time I couldn’t talk, tell them I didn’t want to take that medication any more, and thankfully they changed me back to the medication, Felbatol, that I had been taking. I think you could say that I’m still getting over all of that.


    Comment by David Jensen — August 20, 2018 @ 12:57 PM

    • Oh David! How horrible!

      After all your trials and near-misses, I’m glad the issue has been resolved.

      And it comes down to a med you had already been on. (Successfully?)

      Go figure.

      Well, I’m thankful you’re still with us.


      Comment by Phylis Feiner Johnson — August 20, 2018 @ 2:16 PM

  10. SUDEP seems pretty scary to me, and has never been discussed with me, but I am a newbie at this, with only two witnessed tonic clonic events and other what I believe to be focal seizures. The second tonic clonic one (that initiated Keppra treatment) I was found on a pile of fresh snow siezing. If that happened today in the same location, I would have landed on concrete. I do recall racing heartbeat in all cases but holter monitoring showed no abnormalities. The first eeg had photic reaction in jerking, but nothing showed up on rhe waves. The second one was after Keppra treatment and was completely normal.


    Comment by Marlyn Borger — August 20, 2018 @ 2:31 PM

  11. Epilepsy is not a deadly or contagious disease. Very rarerst of the rare circumstances such instances proper monitoring and frequent observation of the situations possible for such instances would be more helpful


    Comment by Yusuf — August 21, 2018 @ 5:26 AM

  12. Epilepsy can be fatal if untreated.


    Comment by Jeffrey Liakos — August 21, 2018 @ 11:14 AM

    • I wonder how many people actually have it, without being diagnosed and sadly have a tonic clonic seizure that takes their life. If it is an unwitnessed event that causes a fatal injury, how are those statistics recorded?


      Comment by Marlyn Borger — August 21, 2018 @ 1:13 PM

      • Actually, there are even more statistics that are NOT reported because of the lack of autopsies.

        The only SUDEP cases reported are the ones known. Which I’m sure is quite a fraction of the real number. 😦


        Comment by Phylis Feiner Johnson — August 21, 2018 @ 3:25 PM

      • Marlyn Borger, I went into Status Epilepticus in 2015.


        Comment by Jeffrey Liakos — August 21, 2018 @ 4:45 PM

  13. Another great artical Phylis, thanks, has there been any research done around Colour therapy lights, we own a Bi Optron which has delivered well when it comes to wound healing etc, ???


    Comment by Donald Nairn — August 21, 2018 @ 9:12 PM

    • Wow Donald, that’s a new one for me.

      I wish it had been used when my cousin lost his leg due to 3rd degree burns. 😦


      Comment by Phylis Feiner Johnson — August 21, 2018 @ 11:19 PM

  14. Outside of Status Epilepticus, what are other risk factors for this problem?


    Comment by Jeffrey Liakos — August 22, 2018 @ 5:34 PM

  15. Phylis Feiner Johnson, I know that SUDEP is an issue worth taking seriously. Having said that, what are the potential risk factors of this if seizures are effectively controlled? Relatively low or non-existent?


    Comment by Jeffrey Liakos — August 23, 2018 @ 5:19 PM

  16. So true.


    Comment by Jeffrey Liakos — August 25, 2018 @ 11:40 AM

  17. Phylis Feiner Johnson, this is very true. Is SUDEP a risk factor across the board for people with Epilepsy? Or is it a greater risk for people who have gone into Status Epilepticus? I would like to get your perspective.


    Comment by Jeffrey Liakos — August 25, 2018 @ 11:43 AM

    • I think it’s a risk across the board but also, keep this in mind:

      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.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 25, 2018 @ 11:47 AM

  18. Phylis Feiner Johnson, this makes sense.


    Comment by Jeffrey Liakos — August 26, 2018 @ 5:21 PM

  19. Initially I had tonic clonic seizures and they are now controlled with AEDs. I still have focal onset seizures that the meds do not eliminate. Does that mean that I have intractable epilepsy?


    Comment by Lisa Sokoll — July 7, 2019 @ 11:05 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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