The doctor said she had a headache. It was something much worse

The brain scan was clear, but her scalp felt as though it had been doused with acid. Photo / Getty Images

Galen Warden was lying in a hot bath after a punishing week at her demanding marketing job. Her neck and shoulders were, as usual, in knots, so Warden thought she'd expedite the relaxation that a restorative soak usually delivered by sliding under the water.

When she sat up about 30 seconds later, Warden recalled, "it felt like my entire scalp was on fire." Her face, neck and shoulders were unaffected, but her scalp felt as though it had been doused with acid.

It would take nearly three months before the cause of Warden's unusual symptom, which was repeatedly attributed to a tension headache, was revealed. During that time, the emergence of other symptoms failed to prompt the specialist treating her to reconsider her initial diagnosis.

If anything, the new problems seemed to harden the doctor's conviction that Warden's problem was stress-related.

Looking back, Warden said she is struck by what she characterises as her medical naivete.

"It's been a cautionary tale for my friends," she said. "I can't believe I kept going back to a well that was dry."

Shocked by the fiery sensation engulfing her scalp, Warden turned on the shower and ran cool water over her head, frantically trying to think about what might have triggered it. She hadn't rubbed her scalp hard or used a different shampoo or bath product.

As she gingerly dried her hair, the 53-year-old tried not to panic. She popped two over-the-counter pain relievers and when they didn't help, added a third. The pain lifted.

But once the drugs wore off, the pain returned.

On Monday, May 31, 2010, Warden, who was living in Morris County, New Jersey, saw her internist. He advised her to see a neurologist, but told her he didn't have one to recommend.

A week later, Warden saw a neurologist she found whose office was near her home. The doctor performed a quick exam - tapping her knee with a hammer, inspecting her pupils and having Warden touch her nose - a practice she would repeat at every visit. Then she told Warden she was suffering from a classic tension headache.

"I tried to explain that it wasn't inside my head, it was actually my scalp that hurt," Warden remembered. She told the doctor that any sudden movement, or simply touching the top of her head, intensified the pain.

The doctor reiterated the tension headache diagnosis. She advised Warden to take a few days off from work to rest and meditate. She also prescribed Xanax, a potentially addictive anti-anxiety drug.

Warden did what the doctor suggested. But the only thing that relieved the ferocious pain was the maximum dose of nonprescription pain relievers she continued to gobble around the clock.

At her next appointment a few weeks later, the doctor told Warden that a stronger drug might be needed to break the cycle of pain: a weeklong course of methylprednisolone, a corticosteroid that reduces inflammation.

"It worked like a miracle," Warden said. But as she tapered the dose as instructed, the scalp pain returned. "I could barely brush my hair," she recalled.

During her third visit, the neurologist told Warden that prednisone was too risky to take for longer than a week. The doctor prescribed indomethacin, a nonsteroidal anti-inflammatory used to treat arthritis.

Warden said she took the drug faithfully. "There was zero improvement," she said.

By mid-July, Warden had developed two new problems: a daily low-grade fever that began late in the afternoon and left her feeling wiped out as well as widespread tenderness.

"If someone squeezed my arm," Warden recalled, the spot would hurt for several minutes, although there was no visible bruise.

Unable to make it through a day without a maximum dose of pain relievers, Warden wondered how long she could - or should - keep taking them.

She said she told the neurologist that she worried that something serious was wrong. The doctor, she said, replied that the body aches and fever weren't related to her scalp pain, which she insisted was a tension headache.

Perhaps, the neurologist suggested, a migraine drug might work. The specialist prescribed a potent epilepsy drug called Topomax, which is also approved to treat migraines.

The drug didn't help. After a few days, Warden stopped taking it.

At the time, Warden said, she was focused on preparing for a four-day national sales meeting she was required to attend in connection with her job at an international firm. Somehow, she said, she made it through the meeting.

But as her flight home landed in Newark, Warden developed a new problem: pain in her temples so sharp it nearly knocked her out of her seat. The pain, which vanished quickly, recurred without warning several times each day.

"I began to live in fear that it was going to strike at any moment," she recalled.

At an appointment in early August, Warden told the neurologist about the knifelike forehead pain. The doctor repeated the usual quick neuro check, which was normal. She told Warden the new pain was a variant of a tension headache and wasn't sure what more she could do.

"I decided I was done with her," said Warden, adding that she was unsure of where to turn. A few days later, she returned to her internist. Sitting on his exam room table, she burst into tears. She told her longtime doctor that she was planning to go to an emergency room for help - it was the only thing she could think of.

The internist tried to calm her and told her he could think of only one disease that could cause her symptoms and the improvement steroids provided: giant cell arteritis.

A disorder that causes inflammation of the arteries, often in the scalp or neck, giant cell arteritis inhibits blood flow and is considered a medical emergency; without prompt treatment it can cause permanent blindness. It is more common in women and typically occurs after age 50 and often in conjunction with polymyalgia rheumatica, an inflammatory disorder that causes muscle stiffness in the hips or shoulders.

The internist prescribed another week of steroids. (Giant cell arteritis is typically treated with steroids for months.) Within hours the temple pain and fiery scalp vanished, only to recur once the dose was tapered.

When Warden returned to the internist, he refused to prescribe a longer course of steroids, saying the drug was too risky. Confirming the diagnosis of giant cell arteritis, he told her, meant performing a biopsy of the temporal artery, which he wasn't sure was necessary.

Warden decided to return to the physician she trusted most: the gynecologic oncologist who three years earlier had treated her for cervical cancer.

He listened to her story, then ordered a full-body CT scan.

The brain scan revealed nothing unusual. But the chest scan showed a lesion and numerous enlarged lymph nodes.

The oncologist told Warden that she might have developed lymphoma, a cancer involving the immune system. The radiologist suggested an equally grim possibility: lung cancer.

The oncologist called a thoracic surgeon to set up an appointment for Warden. Because she had recently taken steroids, a lymph node biopsy essential in making a diagnosis would have to be delayed for several weeks.

Warden remembers feeling terrified that she would have to deal with cancer again.

But the thoracic surgeon, whom she saw in September, mentioned a third possibility: sarcoidosis.

An uncommon disease marked by the proliferation of tiny collections of inflammatory cells called granulomas, sarcoidosis typically affects the lungs and lymph nodes but can occur anywhere in the body. Its cause is unknown, although some researchers believe it is autoimmune in origin. (Two of Warden's six adult children have been diagnosed with serious autoimmune diseases.)

Sarcoidosis tends to run in families and affects more women than men. Those of African or Northern European descent have a higher incidence of the disease, which has no cure.

The biopsy of Warden's lymph nodes showed that they contained granulomas and not, to her immense relief, malignant cells.

Warden was familiar with sarcoidosis. Her sister had been diagnosed with pulmonary sarcoidosis, the most common form, years earlier. After several years of treatment, the disease had disappeared, as is often the case. But in other people sarcoidosis becomes a chronic disease affecting multiple organs, including the eyes, heart and liver.

The thoracic surgeon referred Warden to rheumatologist Vandana Singh for confirmation and treatment.

"She had the chest inflammation we often see with sarcoidosis," said Singh, who is chief of the division of rheumatology at Morristown Medical Center. But Warden's initial symptom - scalp pain - is "very unusual. I've never seen another patient with it," added Singh, who estimates that she has treated 80 people with sarcoidosis.

But, she said, Warden did not have giant cell arteritis. "That was a red herring."

Singh, who treated Warden until she moved to South Carolina in 2016, said she doesn't know why the neurologist diagnosed a tension headache.

"It doesn't look neurological," she said.

In an effort to control Warden's disease, Singh prescribed high doses of prednisone for six months, which proved effective.

For the past few years, Warden, whose disease has spread to her liver and is considered chronic and systemic, has given herself weekly injections of a small dose of methotrexate, a drug commonly used to treat cancer and rheumatoid arthritis. She also takes gabapentin, a medication that can blunt nerve pain.

Warden said her experience taught her the importance of pushing for answers and dumping a doctor who seems neither knowledgeable nor interested. She checks doctors' credentials and favors physicians who also teach because she has found them to be "more curious and committed to discovering answers."

Warden said she employed these skills in the years after her diagnosis when two of her sons were grappling with unusual diseases.

"As soon as I can tell someone is not helping, I start asking a lot of questions," she said. "And if a doctor doesn't know and doesn't want to know, I move on."