Epilepsy Talk

SUDEP – Who’s at Risk? | September 27, 2020

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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 Resources:

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

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

http://www.sciencedaily.com/releases/2015/01/150121173534.htm?

https://www.epilepsysociety.org.uk/living-epilepsy/wellbeing/sudep?gclid=EAIaIQobChMIwtWeqOix6wIVgZ-zCh19ZQkoEAAYAyAAEgKQOvD_BwE

https://www.epilepsy.com/learn/early-death-and-sudep/sudep/sudep-faq

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

 

 

 


22 Comments »

  1. I have been seizure free for 6 years now, of course, with medication. I have tonic-clonic seizures. My doctor said that it’s a rule of thumb, that you can get off of your meds after being seizure free for 5-6 years. She wants me to start weaning off of them, but I don’t know how I feel about that. I don’t want to ever have another one and just the thought of having one terrifies me! SUDEP is a fear for sure if I stop taking the meds. I’m so confused because I had one doctor tell me, according to my EEG that I will never be able to quit the meds and my current doctor is telling me to wean off. I know that it’s my choice and I think I’m leaning more towards staying on them because when I had seizures, sometimes I did quit breathing. Thoughts on this are welcome.

    Liked by 1 person

    Comment by Katie Ivy — September 27, 2020 @ 5:11 PM

    • Yes Katie, common “wisdom” says that if you’re seizure-free after 3 years, you may go off your meds.

      I chose not to and consider meds extra protection. Like wearing a belt and suspenders.

      And I’ve now been seizure-free for decades. But I still take Lamictal.

      You might find this article interesting:

      The Perils of Discontinuing Your Meds https://epilepsytalk.com/2019/01/16/the-perils-of-discontinuing-your-meds/

      Like

      Comment by Phylis Feiner Johnson — September 27, 2020 @ 5:20 PM

      • First of all, I back you up either way, Katie, but I have an opinion of both sides. Like you, I chose to hang on to one of my meds, Dilantin, that I could have gone off sooner.

        Then after 5 1/2 years, I was told my Vitamin D level was dangerously low and the answer was come off Dilantin and try another med or go off meds completely. It took a while to decide but I went off meds altogether and that’s where I am 14 years later as well as healthy and seizure-free.

        Liked by 1 person

        Comment by Ed Lugge — September 27, 2020 @ 6:01 PM

      • Ah, but you supplemented your deficiency, Ed. Don’t you think that made a difference?

        Either way, congratulations on being healthy and seizure-free.

        Like

        Comment by Phylis Feiner Johnson — September 27, 2020 @ 8:12 PM

      • Here’s what confuses me about stopping meds after a number of seizure-free years: how do you know it’s the not meds stopping the seizures? Isn’t that the whole darn point of the meds? The meds are not cures, so why would your seizures not come back when you stop the medicine, even though it’s been so long?

        Liked by 1 person

        Comment by Hetty Eliot — September 27, 2020 @ 8:29 PM

      • That’s a wonderful question. And that’s why I chose not to go off my Lamictal.

        Like

        Comment by Phylis Feiner Johnson — September 28, 2020 @ 9:40 AM

  2. Ed Lugge, I am also on Dilantin. When you stopped your meds, did you have any seizures at all? I’m just scared to because I missed one dose once and I had a seizure. I take 200mg in the morning and 200mg at night. My husband wants me to stop them because of the damage it does to your bones, but I think I’d rather continue to be seizure free than take a chance of have more.

    Liked by 1 person

    Comment by Katie Ivy — September 27, 2020 @ 6:27 PM

    • Katie, sorry for the delay in response. I was not having seizures for 5 1/2 years before I went off Dilantin. I was scared. I didn’t want to go back to square one but I felt since I reached my goal (the longest string of seizure-free days), my last eeg showed no activity and my epileptologist always asked if I wanted to try going off the final med, I had to. Well, I didn’t have to but you know what I mean.

      I’m almost 20 years seizure-free (November 5 will be that day) and I still feel seizures could happen again if something goes wrong but I’ve experienced a second chance at life and you can’t take that away from me.

      Liked by 1 person

      Comment by Ed Lugge — October 3, 2020 @ 12:45 PM

  3. I don’t blame you Katie. That’s a tough one. You’re between a rock and a hard place.

    Like

    Comment by Phylis Feiner Johnson — September 27, 2020 @ 8:14 PM

  4. Phylis the figures you quote of 7%-17% is quite scary. Does that refer to the % of people who die of SUDEP out of the total who die of epilepsy related conditions? The actual incidence rate for SUDEP in both the US and the UK is given as 1 per 1,000 adults with epilepsy for adults and much less for children. I hope my interpretation is correct because 0.1% looks much less scary than 7% – 17%! What with COVID and SUDEP ( and the election) even I am getting anxious!

    Liked by 1 person

    Comment by Michael H — September 27, 2020 @ 8:46 PM

    • Here are the U.S. stats from the Epilepsy Foundation:

      How common is SUDEP?

      Each year, more than 1 in 1,000 people with epilepsy die from SUDEP.

      People with poorly controlled epilepsy are at greatest risk of dying from SUDEP.

      SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).

      People with only absence or myoclonic seizures are not known to have increased risk for sudden death.

      So, you’re right. I went back to my links and apparently those figures were for people with epilepsy, worldwide.

      https://www.epilepsy.com/learn/early-death-and-sudep/sudep/sudep-faq (U.S. figures of those with epilepsy)

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC320690/ (Worldwide figures of those with epilepsy)

      Like

      Comment by Phylis Feiner Johnson — September 28, 2020 @ 9:53 AM

  5. To be honest with you, when it time to go, it’s time go.
    Therefore putting fear aside let’s face it, as long SUDEP is painless form to permanent sleep, SUDEP beats the agony, panic & hysteria over seizures & eventual death.
    Therefore, until Epilepsy is NOT eradicated from the face of earth just cholera & leprosy, it’s sad to say that SUPED is going tp take too many lives.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — September 28, 2020 @ 9:08 AM

  6. Hi i want to start on Hormon therapy I am 59yrs old scared i will have seizures , what can a do ?
    Thank you.

    Liked by 1 person

    Comment by Sonia g — September 28, 2020 @ 4:26 PM

    • It is important for menopausal women with epilepsy to consult their primary care physician in determining the best course of treatment for their menopausal symptoms.

      After balancing the risks and benefits, if it is decided to use short-term HRT, it’s recommended that a regimen other than Prempro be used for women with epilepsy.

      Instead of using a multi-estrogen based therapy coupled with a synthetic progestin, like Prempro, it’s suggested that you try a single estrogen treatment such as the estradiol patch coupled with a natural progesterone for short-term symptom relief.

      “Menopausal women with epilepsy may experience sleep difficulties due to hot flashes which can in turn increase the frequency of their seizures.

      Treatment of these symptoms, therefore, is clinically important and they could be alleviated, using short-term HRT, although this decision must be carefully considered.”

      https://www.epilepsy.com/article/2014/3/female-hormone-replacement-therapy-may-increase-seizure-frequency

      Women with epilepsy considering HRT have extra factors to consider.

      Impact on seizures: One small study suggested that seizure frequency increased in women who used HRT, but another study found that women who used the type of HRT that includes progestin (a form of progesterone) were much less likely to have worsening of their seizures than those who took only estrogen.

      Impact on bone health:The role of HRT in preventing osteoporosis can be especially important for women with epilepsy, since seizures can increase the risk of falling and breaking weakened bones.

      The problem is worsened by the fact that certain seizure medicines can cause bone loss. These medicines include phenytoin (Dilantin or Phenytek), carbamazepine (Tegretol or Carbatrol), phenobarbital, primidone (Mysoline) and valproic acid/valproate (Depakene or Depakote).

      Women who take these medications should be especially careful to get enough vitamin D and calcium. Exercise is also important to and keep bones strong.

      If you and your doctor decide against HRT, you can try one of the other medications that can help keep your bones strong.

      Impact on hot flashes: If you are troubled by hot flashes, you may be interested in a recent report that the seizure medicine gabapentin (Neurontin) can reduce their frequency and severity.

      This could be an alternative approach for some women. Talk to both your neurologist and gynecologist about the best way to manage the changes of menopause without upsetting your seizure control or causing other health problems.

      https://www.epilepsy.com/living-epilepsy/epilepsy-and/women/menopause-and-epilepsy

      Like

      Comment by Phylis Feiner Johnson — September 28, 2020 @ 4:48 PM

  7. That is indeed quite scary. I do have intractable epilepsy and am considered disabled because of the number of seizures I have. They are simple partial, complex partial and tonic- clonic. And I have to ask, is it really 50% of people like me who die of SUDEP? That seems like a huge percent and terrifying.

    Liked by 1 person

    Comment by Kelly Falk — September 28, 2020 @ 4:52 PM

    • I did go back and look at the links you posted and understand a little better now.

      Liked by 1 person

      Comment by Kelly Falk — September 28, 2020 @ 4:58 PM

    • Kelly, only 0.1% of people in the U.S. will die of SUDEP. Deaths everywhere are very far from 50%. I don’t know how you came up with that figure, but rest assured in actually, your chances of dying from SUDEP are relatively rare.

      Like

      Comment by Phylis Feiner Johnson — September 28, 2020 @ 5:04 PM

      • At the beginning of your post it says,

        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.

        I’m still not entirely sure what that percentage is referring to. Is it saying that of the people with refractory epilepsy that die each year, 50% are from SUDEP?

        Liked by 1 person

        Comment by Kelly Falk — September 28, 2020 @ 5:15 PM

      • This is both scary and misleading. I read the NIH article over (and over) again and found that their definitions of “epileptic conditions” and the conditions of SUDEP were quite contrary.

        I’m not trying to defend them or myself, but when you read something from such a reliable source as the NIH, you assume it to be true. But if you read between the lines and find the holes, it can be very scary indeed.

        So, I apologize. Although it’s documented six ways to sundown, the definition of exactly what kinds of people with epilepsy really qualify for SUDEP, is a bit vague — to say the least.

        “Criteria have been suggested by a variety of investigators to diagnose SUDEP. A reasonable synthesis would yield the following requirements:

        The victim must have had epilepsy, defined as recurrent unprovoked seizures.

        Death must have occurred unexpectedly, with no obvious medical cause, while in a reasonable state of health, in the absence of trauma or drowning.

        Death must have occurred suddenly when observed.

        There may or may not have been evidence of a seizure, but status epilepticus must not have occurred. Evidence for a seizure could consist of either a witnessed seizure or clinical evidence such as a bitten tongue or cheek.

        An autopsy that does not reveal a cause for death is required for the diagnosis of definite SUDEP, whereas a diagnosis of probable SUDEP is given to those who fit the previously mentioned criteria without autopsy.

        Possible SUDEP would include cases in which SUDEP seems a reasonable diagnosis, but there is insufficient evidence regarding the circumstances of death and no autopsy is available.”

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 28, 2020 @ 5:29 PM

  8. Interesting thought, Gerrie. My fear isn’t so much SUDEP, but injuring myself during a seizure being in lifelong pain or more brain injured. Hey, maybe SUDEP isn’t that bad. Not!

    Liked by 1 person

    Comment by skolly9s — September 28, 2020 @ 5:05 PM

    • Exactly Skolly, This particular incident comes to my mind when ever I hear or read about SUDEP.
      About a year ago I was passing by a middle aged man struggling to walk clinging to his two canes.
      Noticing the gentleman was in pain, I said “Hi Sir. How are you doing today”, hoping to divert the gentleman from his painful conditions.
      The frustrated gentleman in pain replied to me “I’m sick & tired of living”, which made me feel sorry for him but can NOT do anything to stop his pain.
      Therefore, while the risks for unsuccessful suicide attempts can be fatal, considering the potential damage to permanent physical or psychological disorders & painful disability that seizure can possibly cause & torment the patient for some time, SUDEP seems peaceful good alternative to the medical hardship that can NOT be cured painlessly in ordinary way.
      After all, life is NOT always worth the endless agony many survivors should sustain every day.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — September 30, 2020 @ 12:45 PM

  9. I’m with you, skolly. I have tried to end my life and it resulted in a string of intractable seizures, so bad that they caused two heart attacks.

    But it wasn’t SUDEP. And I guess, it wasn’t my time to go.

    Like

    Comment by Phylis Feiner Johnson — September 28, 2020 @ 5:09 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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