For Decades, He Had Strange Episodes of Utter Exhaustion
What was causing these spells, and why were they now more frequent?
The 51-year-old man sat at his desk preparing for his next online meeting when he suddenly became aware of a familiar stiffness and exhaustion. Had he slept badly? Or was this the beginning of one of his strange episodes? As the symptoms worsened, he had his answer. He knew that when he started to feel this way, the only recourse was to get into bed before he got any weaker. As he made his way slowly down the hall, his legs felt heavy, as if he were wearing ankle weights. Just lifting them was real work. He passed his wife’s home office without a word. She knew just from looking at him that he would probably have to spend the rest of the day in bed.
For much of their 30-year marriage, he had these strange spells; he would suddenly feel exhausted and weak and have to lie down. He couldn’t work. He was a software engineer, and any mental exertion was too much for him. Once the fatigue fully set in — maybe after the first hour or so — he couldn’t walk, couldn’t stand, couldn’t even sit up. It was as if his body was totally out of gas, worse than how it felt when he ran a marathon. He would lie in a dark room, too weak to even hold up a book and too tired to think. But by the next morning, he would usually be fine, brimming with energy and enthusiasm, like normal. It was so strange.
After more than 20 years, they both had come to expect these episodes. For most of that time, the spells were infrequent, maybe once a month. But recently they became more frequent. The monthly episodes became weekly, then a couple of times a week. They often came, as they did that morning, out of nowhere. Just before leaving his office, he sent an email to the woman he was to meet online. Sorry, he wrote, I’m not feeling well. Could we reschedule?
Over the years the man saw many doctors. They had their theories, but so far none panned out. A few were convinced that he had periodic paralysis, a disorder sometimes linked to thyroid disease, where patients become temporarily paralyzed by too much or too little potassium in the bloodstream. But his potassium was always normal, even during these episodes.
He had EMGs, looking for problems in the way his nerves communicated with his muscles: normal. He had EEGs, looking for problems in his brain. Those scans were normal too; he wasn’t having seizures. Out of desperation, he went to the Mayo Clinic. Doctors there repeated all the tests and added a few more. They had no answers, though they did suggest that he exercise more. He did, and that did help. Indeed, he came to suspect that the reason these periodic exhaustions became more frequent was that once Covid hit, his gym closed down and so did his trainer.
Time after time, he was asked if he was depressed. He didn’t feel depressed. But he started going to a psychiatrist just in case he was wrong. It didn’t take long for the psychiatrist, Dr. Sanjay Patel, to determine that the man was not at all depressed. Even after that diagnosis was ruled out, he continued to see Patel. It made him feel like a real New Yorker, he joked. At the very least, the doctor could listen as his patient tried to understand why he had these strange spells.
If not exercising could affect the frequency of these spells, so could exercising too hard. After a really long run, there was a good chance he would end up in bed the next day. 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.
At his rescheduled meeting, he apologized for the sudden change in plan. No problem, his colleague told him; she said that she had migraines that could come on suddenly and forced her to cancel meetings every now and then. The comment resonated with the patient. A few months earlier he saw a neurologist who said that these transient episodes of weakness sounded like migraines, but thought it unlikely because his exhaustion didn’t come with a headache. The man used to have migraine headaches — the pain in his head was throbbing and intense and was often accompanied by nausea and vomiting. These episodes of debilitating tiredness seemed nothing like those. Still, could these be related to migraines?
One Benefit of Online Meetings
At their next online therapy session, he mentioned the comments about migraines to Patel. The psychiatrist was intrigued. Could you have a migraine without the headache? Patel typed “migraine without headache” into a search engine and clicked enter. Reference after reference appeared for what was referred to variously as silent migraines or acephalgic migraines (literally migraines without head pain), usually describing a migraine that starts with preceding symptoms called an aura but then never becomes a headache.
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.
By Lisa Sanders, M.D. (The New York Times). Image by Ina Jang.
