A new report in Neurology wages war on the hidden numbers of epilepsy-related deaths. According to the authors, we only see the tip of the iceberg. More must be done to halt the rising tide.

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Epilepsy affects more than 4 million Americans. Are epilepsy-related deaths being under-reported?

Epilepsy is a disorder of the brain where normal neuronal activity becomes disturbed. This can trigger a myriad of effects, from subtle changes in emotions through to seizures and loss of consciousness.

The disorder can be caused by a number of factors including illness, stroke and abnormal brain development.

The most well-known symptoms of epilepsy are seizures. These seizures range in severity; to an onlooker, the milder seizures might appear as if someone is simply staring into space.

At the other end of the spectrum, seizures can involve collapsing, shaking and a loss of consciousness.

Roughly 4.3 million adults in America have epilepsy, costing the US an estimated $15.5 billion. It is no small concern and, according to a new report, the impact of epilepsy on mortality might be accidentally and substantially downplayed.

Compared with other neurologic disorders in America, sudden unexpected death in epilepsy (SUDEP) is the second largest cause of total lost life-years (after stroke).

SUDEP occurs either during or just after a seizure. The exact causes are not clear but could include breathing issues and obstruction of airways, heart rhythm changes or failure, or a combination of the above.

SUDEP only accounts for half of epilepsy related deaths.

Seizures that prompt a rapid drop to the floor and a loss of awareness can have serious and sometimes fatal ramifications. A recent report, published in Neurology, claims that epilepsy is not given the priority it deserves in public health matters.

According to the report, epilepsy claims more lives than sudden infant death syndrome (SIDS) and fires. But, despite the comparative prevalence of seizure-related deaths, little is done in the way of public health announcements and education drives.

Author Dr. Orrin Devinsky, from the New York University Comprehensive Epilepsy Center in New York, pulls no punches:

We have done far too little for far too long. Efforts to assess and prevent epilepsy-related death have been distressingly inadequate.”

It comes down to reporting. A death certificate will rarely give epilepsy or seizures as the cause of death; this is for a number of reasons. For instance, epileptic seizures increase over the age of 65. In this group of individuals, autopsies are rarely conducted, and if they are, even when there is some evidence of a recent seizure, the death is often still classified as cardiovascular.

The author relates a telling example:

A 37-year-old man with generalized convulsions since age 12 years and depression died in his sleep. The medical examiner found mild coronary artery intimal thickening and determined hypertensive cardiovascular disease as the cause of death.

Though the medical examiner was informed that the patient was normotensive and had recent tonic- clonic seizures, neither SUDEP nor epilepsy was listed on the death certificate as a contributing cause of death.”

If a seizure causes fatal aspiration pneumonia, the cause of death on the death certificate will be given as “aspiration pneumonia” with no mention of epilepsy. In this way, epilepsy hides in the data.

There are more than 2,750 cases of sudden unexpected deaths in the US per year due to epilepsy; people with epilepsy are 27 times more likely to succumb to sudden death than people without epilepsy.

The report cries out for an increase in general education about seizures, how to prevent them and how to deal with them. Seizures are a clear and significant risk to life. Devinsky gives another example:

“Unlike other disorders where skipping a dose of medication once in a while doesn’t affect how well the medication works, with epilepsy, skipping even a single dose can result in a seizure. Yet few studies have looked at how we can help people remember to take their medicines.”

Devinsky calls for a systematic classification of epilepsy-related deaths. The categories would include SUDEP and death from asymptomatic seizures, but also other categories including deaths due to suicide, complications of anti-seizure medication (increased risk of obesity and cardiovascular disease), suicide, traffic accidents and drowning.

The researchers also recommend an in-depth education drive:

Everyone with epilepsy and everyone who treats people with epilepsy need to know that controlling seizures will save lives.”

The report concludes that to make the educational drive a success, the real numbers behind epilepsy-related deaths need to be uncovered. Once the facts are in, the dissemination of life-saving education can begin.

Medical News Today recently covered research into the potential therapeutic effects of music for people with epilepsy.