Seizures are frightening, sometimes surreal, experiences for people who have them -- and for observers.
Perhaps it's because seizures come on unexpectedly or that they produce such unusual symptoms. It's certainly not because they're uncommon. Roughly 1 in 100 people experience recurrent seizures, a condition commonly known as epilepsy, according to a study released in August by the national Centers for Disease Control and Prevention.
But epilepsy also creates profound social, emotional and occupational difficulties.
Epileptic seizures occur when brain cells misfire, releasing a burst of abnormal electrical activity. The symptoms of a seizure vary depending on the area of the brain where the misfire occurs.
In some cases, they cause involuntary movements, such as jerking of the arms or legs; in others, they cause loss of consciousness, loss of muscle tone, lapse in awareness (or "zoning out") or abrupt emotional changes.
Surprisingly, the physical problems may be among the least troublesome aspects of the disease.
The fear factor
In a study published in Epilepsy & Behavior in 2000, researchers asked more than 1,000 men and women with epilepsy, "What is the worst thing about having epilepsy?" The leading response was fear.
Some were afraid of dying, some of losing their job, and some of suffering a seizure while driving. Others were simply afraid of having a seizure in public and of the resulting humiliation.
The degree to which epilepsy limits life choices and experiences was the second most-common response to the researchers' question. In most states, including California, people with epilepsy whose seizures aren't well controlled cannot obtain a driver's license.
They're also ineligible for certain jobs -- such as truck driving, air traffic control and piloting -- and face enormous challenges securing jobs in areas such as construction, firefighting and law enforcement.
Further, recurrent seizures often result in depression and may be associated with a number of medical conditions such as obesity and asthma.
According to the CDC survey, people with a history of epilepsy report more than twice as many mentally and physically unhealthy days as those without the disease.
Although aggressive treatment and control of seizures can greatly improve quality of life, people with epilepsy frequently go under-treated.
Nearly half the adults with active epilepsy surveyed by the CDC reported that they had experienced seizures within the last three months; of those, 65% said they'd had more than one.
"With optimal care, we ought to be able to completely control seizure recurrence in roughly 70% of people with epilepsy," says Dr. David Thurman, a neurologist with the CDC's epilepsy program.
Complete control means remaining seizure-free year after year. "There's clearly a gap between what can be done for individuals with epilepsy and what's being done.
"The vast majority of people who are having ongoing seizures should probably be in a specialist's hands," Thurman says. "That means seeing a neurologist or even a neurologist who subspecializes in epilepsy."
Neurologists are well-versed in the use of anti-epileptic drugs -- which to use, how much to increase the dose and when to combine medications.
Yet the CDC study found that more than 1 in 3 adults with epilepsy hadn't seen a neurologist or epilepsy specialist in the last year.
Cost an issue
For many, cost is a barrier. In the CDC study, nearly 1 in 4 adults with a history of epilepsy reported that cost had prevented them from seeking care from a doctor within the last year.
For some, lack of insurance likely played a role; Thurman speculates that others were underinsured and that the out-of-pocket expenses prevented them from getting care.
For others, simply getting to the right doctor can be an issue. "Transportation is a real problem for people with epilepsy," Thurman says. Many aren't allowed to drive; others live too far from major medical centers to make seeing a specialist feasible.
But even people receiving the best care may continue to have seizures if they don't properly take their medications. Almost 1 in 6 adults who had experienced recent seizures was not taking the epilepsy medication, the CDC study found.
"Misconceptions about epilepsy are widespread," says Rosemarie Kobau, a behavioral scientist with the CDC's Epilepsy Program and a coauthor of its recent study. Until there's better understanding -- among physicians and the public alike -- there's unlikely to be much progress made."
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Seizures and epilepsy
Up to 10% of people will suffer a seizure at some point, but not all of them have epilepsy. Epilepsy is a term reserved for those who suffer repeatedly from seizures.
Anything that disrupts the normal pattern of brain activity can trigger the condition. A specific cause can be identified in only about 30% of people with epilepsy.
* Head trauma
* A lack of oxygen during birth
* Infections such as meningitis
* Alzheimer's disease and other degenerative brain disorders
* Brain tumors and other abnormalities in the brain's structure
* An imbalance of neurotransmitters or other chemical functions in the brain
-- Valerie Ulene