Migraines, memory loss: Was it all in his head?
Tuesday, February 16, 2010
Karen Hammerman could see that her son was upset, and when he told her why, she was unnerved. Adam Hammerman, then a 16-year-old sophomore at Charles E. Smith Jewish Day School in Montgomery County, had missed a week of school because of a virus and telephoned several classmates to see what assignments he'd missed.
"Something's wrong," he told his mother last May. "All my friends are mad at me. They say I've called them five times already and they're not going to tell me again." But Adam had no memory of making the calls.
The incident, Karen Hammerman soon discovered, was not isolated. One morning as Adam prepared to take a shower, he screamed after seeing himself in the mirror: He said he did not remember getting a haircut the previous day. He called his mother from school to ask what time she was picking him up, then called again five minutes later to ask the same thing.
"Basically it was like living with a 16-year-old Alzheimer's patient," Karen Hammerman recalled.
Despite numerous tests, nearly a dozen doctors in Washington and Baltimore could find no reason for Adam's sudden and profound memory loss. "They would either tell me, 'I've never seen anything like this,' or else that he's making it up," his mother recalled. One neurologist's assistant castigated Hammerman for insisting on expensive tests for a problem that was clearly psychological.
As Hammerman ferried her middle son to test after test, she said she "went back and forth in my own mind": If Adam's problem was emotional, she could accept that and would see that he got help. But why would he make it up? And why did it start after the virus?
A vital clue lay buried in a two-year-old doctor's report that was not discovered until the Rockville family had flown halfway across the country in search of an answer.
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The first sign of a problem occurred in 2006. Adam was walking into the kitchen when his vision suddenly went black and he felt briefly dizzy. The episode lasted a few seconds, but it kept recurring. An eye exam was normal, as was an MRI scan. Both a neurologist and a neurophthalmologist, who ruled out a tumor, suspected Adam might have migraines, although he had no head pain.
By 2007 Adam began complaining of intermittent dizziness and a headache, particularly when he got out of bed in the morning. The neurologist thought he might be showing signs of a condition called POTS -- postural orthostatic tachycardia syndrome -- an imbalance of the autonomic nervous system, which controls blood flow to various parts of the body. POTS patients have impaired circulation, and the disorder is characterized by a rapid rise in heart rate and a drop in blood pressure upon standing.
The cause of POTS, which is not well understood, is unknown. The condition typically occurs in females between 15 and 50, sometimes after a pregnancy, trauma or viral illness, according to the National Institutes of Health. POTS patients often faint, but Adam did not. And a key diagnostic test for POTS called a tilt-table test -- it involves strapping a patient to a table that is tilted while blood pressure and heart rate are monitored -- was negative, Karen Hammerman was told, because Adam's blood pressure did not fluctuate.
Whatever it was, the problem didn't seem to bother Adam much. And because a host of serious conditions had been ruled out, doctors predicted he would probably outgrow it.
Things changed after the virus, which seemed like a classic case of flu, complete with fever, fatigue and achy joints. Once he recovered, it was clear something was wrong. The memory problem was the most obvious symptom, but Adam felt exhausted and complained of a nearly constant headache.
His pediatrician ordered blood tests, which indicated possible Lyme disease; Adam began taking an antibiotic. An MRI was suggestive of a sinus infection. The neurologist thought he might be suffering from excess fluid on the brain and referred him to an infectious-disease specialist, who prescribed a second antibiotic. Meanwhile an ear, nose and throat specialist ruled out sinusitis.
Another neurologist told Karen Hammerman that some of his symptoms could be caused by POTS but that he had never seen a POTS patient with memory loss. "He said we should dial down the dialogue: 'If you stop talking about it, he'll stop paying attention to it.' " Said Hammerman, "We ignored it for two weeks, and he got worse."
Adam remembers little from those months. "I remember I was scared, but I wasn't freaking out every single day," he said. "I did get a little sick of going to all the doctors, but I kept hoping one would figure it out."
After doctors ruled out epilepsy, migraines, Lyme disease and several serious viruses including West Nile, a consensus emerged: Adam's memory problems were not real. One neurologist's assistant was blunt: "You insist on tests for your son when they are all normal and there is nothing wrong with him," Hammerman recalled. Hammerman said another specialist told her that "with the degree of memory loss [Adam described], his MRI should look like Swiss cheese."
Although she didn't tell Adam what the doctors had said, Hammerman sometimes wondered if they were right. She kept coming back to one episode: For a year Adam had been counting down the days until he was old enough to get his learner's permit. But over the summer he told his mother he needed to stop driving because something was really wrong with him. Why would a 16-year-old boy sabotage that, she wondered.
In September, two physicians recommended a new pediatric cardiologist, Hasan Abdallah of Northern Virginia. By then Adam's parents had decided to take him to the Mayo Clinic in Rochester, Minn., for a complete work-up.
Abdallah's approach was different. As Adam lay on an examining table for 15 minutes, Abdallah monitored his heart rate and blood pressure as well as the appearance of his hands and feet. When Adam stood, the change was dramatic: His heart rate shot up by about 40 beats (10 to 15 is normal, according to Abdallah), his face grew pale, and his feet and hands turned a beefy red, then bluish, a sign of impaired circulation.
Abdallah told the Hammermans he had treated other teenagers with POTS who developed severe memory problems after a virus, just like Adam, and had been accused of faking their symptoms. Abdallah said he believes many doctors miss the diagnosis because they are unfamiliar with POTS, a newly described disorder that mimics other diseases, or have never seen a POTS patient with memory impairment.
"These kids are so badly affected because everyone thinks they're lying. Some go from doctor to doctor and become depressed and isolated," he said. "And parents suffer along with their kids."
While Adam was elated, his parents were initially wary. "We were skeptical because other places hadn't found it," Karen Hammerman said. "We wanted to be sure."
Three weeks later, after a six-day work-up, Mayo specialists confirmed the diagnosis; one told Adam's father, Ira Hammerman, that 10 to 20 percent of his pediatric POTS patients have memory problems "just like Adam." As Karen Hammerman and a Mayo doctor were reviewing Adam's voluminous records, she pulled out the report from the 2007 tilt-table test, which she had been told was negative for POTS. In fact, it showed a significant rise in Adam's heart rate when he stood, indicating he had met a key criterion for the disorder even though his blood pressure did not change markedly.
Adam is following Mayo's strict treatment regimen, which includes medication, exercise and a high-salt, high-fluid diet to increase blood flow and improve circulation; he sees Abdallah regularly. His memory is improving, and his school has made accommodations. "I'm slowly but surely getting back into the life of a high school junior," he said.
His parents are hopeful that he will make a complete recovery, which appears to be more common in adolescents than partial improvement. "I've told him you'll do everything you need to do, including college -- I just don't know when," Karen Hammerman said.
To parents facing skepticism similar to the kind she encountered, Hammerman has some simple advice: "Trust your child. And trust your gut."