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Sudden Unexpected Deaths happen in populations
of people without epilepsy, but some people with epilepsy have
a higher risk.
Sudden Unexpected Death in Epilepsy is uncommon
but is a recognised syndrome where a person with epilepsy dies
suddenly and no other cause of death is revealed. SUDEP has
been shown to be related to seizures. SUDEP can occur in individuals
with infrequent as well as severe epilepsy, but risks are negligible
for anyone who is seizure-free.
Some types of seizures are not normally associated
with SUDEP so it is important to talk with your doctor to establish
whether this is a risk which is relevant to you or not and to
put any risk into proper perspective.
The Background Risk of SUDEP
In the general population of people with
epilepsy the risk of SUDEP is of the order of 1:1000 per year.
A 1:1,000 risk is similar to the risk of smoking 10 cigarettes
a day. For individuals with severe epilepsy the risk increases
to 1:100-300 per year. Those patients referred for assessment
for surgery but deemed unsuitable have a risk of about 1:50.
But all risks are individual….
Particular risk factors of SUDEP
include:
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Generalised tonic-clonic seizures |
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Uncontrolled seizures |
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Young adults |
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Seizures during sleep |
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Unwitnessed seizures (living alone) |
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Abrupt and frequent changes in medication |
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Failing to take prescribed medication |
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Excess of alcohol |
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People with epilepsy whose seizures are not recorded in
medical notes* |
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*We think this may be a measure because regular
monitoring of seizures is part of good management of epilepsy.
Why do some seizures and not others
carry risks?
It is not fully understood why SUDEP deaths
occur. Several different mechanisms may be involved, and there
may be no single explanation for all SUDEP deaths. The two primary
explanations that are most likely are:
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Cardiac: If there is an electrical storm
in the brain it may spread to areas that control heartbeat.
This could cause a fatal cardiac event. |
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Respiratory: an electrical storm may spread to the part
of the brain responsible for respiration. It is known that
many people who experience seizures stop breathing for a
significant time. |
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