SUDEP

SUDEP is Sudden Unexpected Death in Epilepsy.  It is NOT a given that, if you have epilepsy you are going to have SUDEP, and that is what this page is about… to take some of the fear out of it.

Not that my kid was scared to death about it when she figure out that it can happen… but hey… reality is that the whole thing is scary and if SHE is scared, that means a lot of other people probably are, as well… and fear isn’t the way to live your life, whatever you face each day.

SUDEP can happen, and it can happen without warning, so being informed is critical.  But information without the scare factor.

From SUDEP Aware <I HIGHLY recommend reading this site and spending some time finding out what they are about… there is a lot of scientific documentation there… news related informations and support for people who have been impacted by SUDEP.>

SUDEP refers to the unexplained death of an individual, with a diagnosis of epilepsy, who dies suddenly, in benign circumstances, without a structural or toxicological cause for death being found at autopsy.

It is not a condition or disease, but rather the category to which these types of unexplained deaths are assigned.

“Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which postmortem examination does not reveal a toxicologic or anatomic cause for death.”

SUDEP definition per Nashef 1997

The following sections describe our current understanding of SUDEP and may, alternatively, be viewed as a pdf factsheet (click here):

What causes SUDEP?

The precise mechanism, or cause, of death is, as yet, not understood.  Most sudden deaths of people with epilepsy are unwitnessed and this makes it difficult to determine what, exactly, occurs in the last moments of life.  By definition, the autopsy does not reveal a cause of death suggesting that the terminal event is due to disturbance of function, not structure.  Most frequently, but not always, there is evidence for seizure activity prior to death and recent studies strongly support a close relationship between seizure episodes (especially generalized convulsions) and SUDEP.

Various potential mechanisms have been proposed and these mainly involve the cardiac and/or respiratory systems.  It is unknown whether mechanisms are jointly or severally responsible, what leads to the fatal cardiac event and/or the cessation of breathing, what role the brain and/or seizure plays in the whole process or, indeed, whether the same events trigger SUDEP in each person.

Risk factors for SUDEP

Without a known cause, it is not feasible to accurately determine whether or not an individual may be predisposed to SUDEP.  Investigations of SUDEP circumstances have identified several associated or contributory factors which do serve to indicate some extent of risk to the individual (that is, whether at higher or lower risk of SUDEP).  The factors most consistently identified in case studies include those which are deemed unmodifiable, such as early onset of epilepsy and young adult age, and those which are deemed modifiable with the potential to lower SUDEP risk.  These include, but are not limited to, poorly controlled seizures (especially generalised tonic-clonic seizures), poor compliance with the anti-epileptic drug (AED)  regime and the number ofdifferent types of AEDs used.

What is the incidence of SUDEP?

SUDEP is estimated to account for up to 18% of all deaths in patients with epilepsy.

Consistent, and comparable, data on the incidence of SUDEP and its risk factors is proving difficult to ascertain.  This is due to differences in research methodologies (including, definition of SUDEP, study type and reference populations) and inevitable methodological limitations.  Most studies are restricted to smaller sample sizes and select epilepsy groups (such as tertiary care clinics or residential homes) because of the relatively rare incidence of SUDEP in the population and the impracticality of studying large numbers of individuals with epilepsy from diagnosis to death.

The alternative research approach, conducting retrospective studies of those identified as having died from SUDEP, is hampered by the apparent underuse of the term SUDEP as a cause of death on death certificates, as found in the UK (Langan et al 2002) and the USA (Schraeder et al 2006). Instead, the cause may be registered as, for example, ‘respiratory failure’ or ‘unascertained’ and would thereby be erroneously excluded from SUDEP case studies or statistics.

Epidemiological data from research conducted to date has demonstrated substantial variance in incidence depending on the epilepsy cohort studied.  This has been shown to range from 0.09 per 1000 person-years in a community-based study (Lhatoo et al 2001) to 9 per 1000 person-years in candidates for epilepsy surgery (Dasheiff 1991).

Minimising the risk of SUDEP
In the current absence of a proven SUDEP prevention method, the recommended approach is to attempt to keep modifiable contributory factors to a minimum.
As research indicates that SUDEP is largely a seizure-related phenomenon, optimisation of seizure control is highly important.  Some recommendations to help achieve this include:

  • seeking regular medical consultation to re-evaluate epilepsy diagnosis, review medication and the possibility of new treatments, discuss implications of lifestyle changes etc;
  • maintaining compliance with medication regime;
  • identifying possible triggers for seizures and determining an effective strategy for keeping these to a minimum.  For example, maintaining regular and adequate sleep patterns or learning ways to better manage stress.

It is also prudent for family, friends and caregivers to be informed of what to do during and following a seizure.  This includes knowledge of the recovery position and cardiopulmonary resuscitation techniques.  In addition, the necessity of calling an ambulance if the seizure lasts for more than five minutes or repeats without full recovery and of staying with a person for 15-20 minutes after the seizure to ensure that recovery continues.

6 Comments (+add yours?)

  1. Trackback: 2010 in review « A Day Like No Other
  2. Anna Ball
    Jun 10, 2011 @ 08:05:12

    A friend of mine died of SUDEP last Friday. He was 28 years old. We were work colleagues, both with epilepsy and would often chat about how we both were. His epilepsy (like my own) was poorly controlled. On diagnosis of the illness he found it difficult to slow down and to take better care of himself (he was working long hours, going out and socialising a lot). I found that working part time, not full time has helped me, because there is certainly less stress. But he was a very young man, career-minded. He found it difficult to work with the illness, I think. He wanted to continue life as it was before the diagnosis, which is perfectly understandable.

    The onus should be on the medical profession to impress on young people with newly diagnosed and difficult to control epilepsy that they have to slow down because SUDEP is a very real problem and it is not really all that uncommon, looking at the figures. After what happened to my friend, I realise it is not something that should be skirted around. It should be highlighted as a real risk, particularly to newly diagnosed young adults.

    Reply

  3. Vic orban
    Jan 26, 2012 @ 14:20:55

    My son Clark survived a SUDEP seizure in early Jan 2012. With gods grace we were in the the hospital because of a seizure at work that morning.The second seizure happened just as clark was receiving a medication IV. His heart stopped for 20 sec and was revived by the doctor with chest compressions. He is 30yrs old male with some learning disabilities. These are high on the risk factor for SUDEP but we were never told about the risks or truely cautioned about taking the medication because your life depends on it. God had hid hand on clark and our family that day. We must get the word out before tragedy strikes and families are devistated.thanks for listening and I want to help- In Gods Grace

    Reply

  4. andyswarbs
    Jun 19, 2012 @ 09:17:54

    My blog (created in memory of my daughter) has a lot of information on SUDEP.

    Reply

  5. Linda Stern
    Feb 15, 2013 @ 03:59:51

    This morning My 18 year old nephew was found dead in his freshman dorm by his roommate. He had been diagnosed with epilepsy several years ago. He would have seizures at night and at least once was found blue and not breathing. Despite serious concerns by hIs parents ,drs. cOnsistantly reassured them that if it happe Ed again he just start breathing again and they shouldn’t worry. The sent him off to college and he is dead. Why did the medical establishment ignore or rather deny the danger

    Reply

    • alicorndreams
      Feb 15, 2013 @ 06:26:21

      Hugs… and Prayers… I’m so sorry. It should never be allowed to happen. I don’t understand the medical community discounting it…

      Reply

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