For Decades, He Had Strange Episodes of Utter Exhaustion – The New York Times

Four out of five migraineurs may have symptoms that herald the onset of the migraine before the headache itself. The first signs often arrive with a change in mood, food cravings, light sensitivity or fatigue. One in five can have additional symptoms that are more localized and last anywhere from five minutes to an hour. The most common are visual, often with shapes that appear before the eyes and enlarge — but aura can also manifest as ringing in the ears or difficulty speaking.

Could the man’s day of exhaustion be the precursor for a migraine headache that never arrives? The more the duo read, the more convinced they were that this is what he had. Patel did a little more searching and referred the patient to a headache clinic in Boston.

The patient was able to have his first video visit with a headache specialist two weeks later. He described his symptoms and the timeline. It starts off with a feeling of malaise, he said — as if he were coming down with something. Then after half an hour, stiffness arrives in his neck and shoulders, sometimes even his jaw. Another half-hour later, the weakness kicks in and he has trouble even sitting up. But he didn’t get headaches and hadn’t for decades.

The specialist had been seeing migraine patients for more than 30 years and knew that migraines came in many shapes and sizes. What the patient described wasn’t an aura: It lasted far too long. It was as if he had a long episode of the preliminary symptoms but never quite got the headache. Moreover, he had a history of migraine headaches and, over time, a patient’s migraines can change so that they have many of the symptoms but not the headache. Indeed, experts in the field no longer call the disorder migraine headaches but rather migraine disease, because the headache is only a part of the bigger picture. And the way these debilitating symptoms came out of nowhere and then resolved completely was consistent with migraine disease.

There are no tests for migraine — it is a diagnosis made based on the patient’s story. The story this patient was telling didn’t make the diagnosis certain, but it was possible. To test the diagnosis, the headache specialist suggested that they try treating the episodes with medications that can stop a migraine from progressing. A new medication, approved by the F.D.A. just over a year earlier, called ubrogepant or Ubrelvy, had been effective for many. The drug blocks a protein that promotes the inflammation in the brain that is thought to initiate the process that produces migraines. When taken at the very start of the symptoms, it can stop the episode in its tracks. The patient needed no persuading. Anything that might free him from the unpredictable tyranny of these spells was worth trying.

The medication was life changing, the patient told the specialist at their next appointment. He took it when the stiffness was first starting to set in, and within a couple of hours, it was gone completely.

For decades the presence of the typical headache was the defining quality of migraines. 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.

Lisa Sanders, M.D., is a contributing writer for the magazine. Her latest book is “Diagnosis: Solving the Most Baffling Medical Mysteries.” If you have a solved case to share, write her at Lisa.Sandersmdnyt@gmail.com.