The internet has really revolutionized health information.  I don’t know that is a good thing all the time but it does help.

It also can scare people who are newly diagnosed.

Yesterday she found out about SUDEP… Sudden Unexpected Death In Epilepsy… and she was instantly petrified.

University Hospitals of Cleveland has a really great site that defines SUDEP… without being unduly scary.

  • SUDEP account for 10% of all epilepsy-related deaths; 85% of these fatalities occur between the ages of 20-50 years.
  • The incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year which is at least 10 times of the sudden death rate found in the general population.
  • What that means is that, if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have “Sudden Death”. 

SO what is the real deal?

What are the Risk Factors of SUDEP?

  • People with refractory (uncontrolled or poorly controlled) epilepsy
  • People with severe epilepsy and learning difficulties
  • Young patients with a long history of generalized tonic-clonic seizures
  • Having at least a 2-year history of epilepsy
  • People who take 2 or more anti-epileptic drugs (especially if combined with psychiatric agents)
  • Poor compliance with anti-epileptic medications (Autopsies reveal that, at the time of death, 50% of affected patients had blood concentrations either below therapeutic levels or in completely undetectable amounts.)
  • Alcohol abuse (definite links found)
  • Alone during seizure

AND… what can be done to help prevent it???

Can Any Precautionary Measures Prevent SUDEP?

  • Controlling seizures seems to be the most important thing, however, a very few people have not survived their very FIRST seizure so PREVENTION is important.

<<< Honestly, I’m not sure how this one works… if you don’t know you have seizures, I’m not sure how realistic is is to try to prevent the first one… >>>

  • Keep appointments so your doctor can monitor any changes, and adjust your medications accordingly.
  • Take medications for seizures regularly
  • Avoid sudden drug withdrawal, or dosage changes
  • Adopt a healthy lifestyle:
    • Maintain regular and adequate sleep patterns
    • Exercise regularly
    • Eat regular, nutritious meals
    • Learn to cope with stress
  • Avoid alcohol and street drugs
  • Always stay with company so that someone can help during seizure
  • Nocturnal Seizures –  Seizures occuring during sleep have a higher incidence of SUDEP.   Preventive measures might include having the bed near the floor, changing from a feather to a  solid foam pillow (which may reduce the possibility of suffocation), and having a monitor to alert others in the home when a seizure occurs.

1 Comment (+add yours?)

  1. Maria Gonzalez
    Oct 27, 2012 @ 21:52:28

    My sister recently suffered from sudep, she had to be coded and the difribulator was used. Due too this she suffered extreme brain trauma due too lack of oxygen. How common are these cases of someone surviving.


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