The Pain Was Squeezing His Head Like an Octopus. What Was It?

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The wife immediately searched the term on her phone. Giant cell arteritis (G.C.A.) is an autoimmune disease, and like most such diseases, it is rare. It causes inflammation and pain in the blood vessels of the face and brain. The couple scrolled through the description of the disease and the patients who have it. It’s seen in those over 50 and is most common in people of Northern European heritage. It’s much more common in women than men — but men do get it. And it seemed to account for every one of her husband’s symptoms: headache, double vision, jaw pain that worsens with use. Everything.

Dr. Danielle Belser, the emergency-​medicine doctor on duty, entered the cubicle and introduced herself to the couple. The patient quickly went through his story, and after a short examination, the doctor stepped back. “I have a few ideas,” she said. She held her hand over the side of her face, with the first three fingers extended toward her mouth, her nose and her eyes. The fifth cranial nerve, she explained, also called the trigeminal nerve, comes out of the brain just in front of the ear and immediately divides into three branches that provide sensation to the skin of the face, the nose and the mouth. In trigeminal neuralgia, an injury to the nerve causes terrible pain in one of these branches.

Even as she was explaining her theory, she could see the couple shaking their heads. They were quite familiar with trigeminal neuralgia, the wife explained, because she had it just a couple of years before. It was awful and painful, but it wasn’t what her husband had. She was sure of that. “I know you’re going to hate this,” the wife added, “but we have a different idea about what it might be: giant cell arteritis.” The doctor smiled. “That was the very next thing on my list,” she said.

Belser ordered blood tests to look for signs of the significant inflammation this disease causes. If they were high, it could indicate the presence of G.C.A., but to really nail the diagnosis, the patient would need to get a biopsy of his temporal artery. In autoimmune disorders like this, the immune system mistakenly starts attacking parts of the body it’s designed to protect. In G.C.A., the targets are usually the blood vessels of the face, the eyes and the brain. Untreated, the disorder can cause blindness, strokes, even heart attacks. Because of that risk, when the diagnosis of G.C.A. is considered, treatment with high doses of steroids must be started immediately — even before the biopsy.

When the blood tests came back positive, the patient was given his first dose of prednisone. He would be on it for months, perhaps years. The headaches disappeared after the first couple of doses. And by the end of the week, he could eat again. The biopsy confirmed what he already knew: He had G.C.A. He has been on a high dose of prednisone since early this summer. His rheumatologist is slowly tapering the medicine, but no one can tell him how long he’ll need it. His face, he told me recently, is a little rounder than it used to be. Prednisone often causes what’s called a moon face. The rest of him is a little rounder as well — weight gain is another effect of the drug.

Sarah Cope is thrilled that she got the diagnosis right. She has always prided herself on her research skills, she says. “I’m 35. That means I know how to use a card catalog. But I can also use a computer to get the right answer.”


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 [email protected]

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