“I don’t think she ever had migraines,” although roughly 30 percent of people with epilepsy do, said Gilliam, an epilepsy specialist. MacDonald’s symptoms, he said, were “pretty textbook” for complex partial seizures: the aura, followed by a blank stare, gibberish and lip-smacking.
The mortality rate for people with complex partial seizures is two to three times greater than for the general population, in some cases because they sustain serious injuries from falls or other accidents, according to an article in the online medical encyclopedia eMedicine. Head trauma and infection can trigger these seizures, which impair awareness and can result in a temporary loss of consciousness. In other cases, such as MacDonald’s, there is no apparent cause.
MacDonald said her initial reaction was relief. “I don’t want to say I was happy, but I was glad there was an answer. I’d gone through this for 11 years.”
Gilliam said that some of his patients have had undiagnosed complex partial seizures for as long as 15 years. “I’ve seen two people in the past week that are exactly like [MacDonald’s] case,” he said. The difficulty patients have describing the episodes, along with their brevity, may contribute to delayed diagnosis, Gilliam observed. And among some physicians, he added, there is a “lackadaisical attitude” about finding the correct diagnosis.
Having epilepsy meant an immediate ban on driving — MacDonald could not drive until she was seizure-free for six months — and a trial of various potent drugs, none of which controlled her seizures. One option when medications fail is surgery to remove the part of the brain where seizures originate, a procedure that can result in a stroke or even sudden death.
MacDonald said she was eager to have the operation on the chance that it would end the spells that had consumed her life. On Feb. 2, 2010, she underwent a 10-hour procedure called a craniotomy temporal lobectomy; neurosurgeons removed a portion of her hippocampus to try to quell the episodes.
MacDonald has been seizure-free ever since and takes drugs in diminishing doses; she expects to be weaned completely from the medications in the next year. She said she will be forever grateful to Gilliam for figuring out what was wrong, putting an end to 11 years of frustration and fear. “How can you repay somebody for giving you your life back?”
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