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April 4, 2022

A 51-year-old suddenly couldn’t walk, stand, or sit up. What was wrong?

Daily Briefing

    For more than 20 years, a 51-year-old man searched for an explanation behind his strange, debilitating episodes of severe fatigue, Lisa Sanders writes for the New York Times Magazine—but doctors were not able to pinpoint the unusual diagnosis until one of the patient's coworkers made a passing remark that helped unravel the mystery.

    'Any mental exertion was too much for him'

    At the onset of these episodes, the man would feel "a familiar stiffness and exhaustion" that would progress to the point where he was so fatigued that "he couldn't walk, couldn't stand, couldn't even sit up," Sanders writes. In fact, when these episodes struck, the patient—who worked as a software engineer—couldn't even do his job because "any mental exertion was too much for him," Sanders writes.

    "It was as if his body was totally out of gas, worse than how it felt when he ran a marathon," she adds.

    "He would lie in a dark room, too weak to even hold up a book and too tired to think." However, the man would typically be fine the next morning, "brimming with energy and enthusiasm, like normal."

    Initially, the man's episodes were infrequent, Sanders writes, occurring about once a month—but over time, they began to occur more frequently: weekly, then multiple times per week. Typically, the episodes seemed to come out of nowhere.

    A migraine that never comes

    Over the years, the patient had seen several doctors—each with their own theories—but they had never been able to identify the source of his strange episodes.

    While many doctors were convinced the man was depressed, he repeatedly told them that he did not feel depressed. Still, the man decided to see Sanjay Patel, a psychiatrist, "just in case he was wrong," Sanders writes.

    However, Patel quickly ruled out the possibility that the man was depressed. Despite not being diagnosed with depression, the patient continued to visit the psychiatrist to try to discover the cause of his mysterious fatigue.

    The patient also realized that exercising too much or too little influenced the frequency of the episodes. "After a really long run, there was a good chance he would end up in bed the next day,"

    Sanders writes, "Because of that, he thought for a while that he might have chronic fatigue syndrome, which is also known as systemic exertion intolerance disease (S.E.I.D.). But he usually recovered within 24 hours, and that wasn't true for those with S.E.I.D."

    Then, after the patient had to cancel a work meeting to accommodate his illness, one of his coworkers made a passing comment about how she too had to occasionally reschedule meetings due to migraines that "could come on suddenly," Sanders writes. The comment resonated with the patient, as he had seen a neurologist a few months earlier who said the patient's transient episodes of weakness resembled migraine symptoms—though he thought it was unlikely, given his exhaustion was not coupled with headaches.

    At his next meeting with Patel, the man asked if it was possible to get a migraine without a headache. When Patel typed "migraine without headache" into his search engine, several references appeared for "silent migraines" or "acephalgic migraines," which are "literally headaches without a head," according to Sanders. These search results described migraines that began with preceding symptoms known as an aura but then never developed into a headache.

    Two weeks later, the patient had his first video visit with a headache specialist who had over 30 years of experience treating migraine patients. When the man described his symptoms to the specialist, he concluded that the sudden, debilitating onset of symptoms that resolved completely were consistent with migraine disease.

    A 'life changing' treatment

    To test the migraine disease diagnosis, the specialist suggested that the man try treating his episodes with medications designed to stop the progression of a migraine. He prescribed him a new FDA-approved medication, called ubrogepant or Ubrelvy.

    The drug works by blocking a protein that triggers the type of inflammation in the brain that is believed to initiate the process that produces migraines. If taken at the onset of symptoms, the drug can typically stop the episode before it progresses further. According to Sanders, "[t]he patient needed no persuading. Anything that might free him from the unpredictable tyranny of these spells was worth trying."

    At the patient's next appointment with the specialist, he said the medication was "life changing." He took it as soon as he started to feel any stiffness, and within a few of hours, his symptoms were completely gone.

    "For decades the presence of the typical headache was the defining quality of migraines," Sanders writes. "Experts like the one who saw this patient now recognize that migraines can change over time so that sometimes they aren't even headaches anymore." (Sanders, New York Times Magazine, 3/31)

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