As Tom Wells and his wife, Susan, settled into their seats in a recently renovated Maryland movie theater in October 2015, she asked him if they should leave.
Wells had spent more than a decade battling headaches triggered by exposure to the smell of new cars or fresh paint. Susan Wells noticed the faint but unmistakable chemical smell of new carpet and paint and asked her husband what he wanted to do.
Wells, who had also detected the odor, replied that he would probably be fine — it was a big theater, he rationalized — so the couple stayed to watch the Cold War drama “Bridge of Spies.”
What Wells did not anticipate was that the three hours he spent in that theater would be the worst decision he ever made. “I don’t know what the hell I was thinking,” he said recently.
Six years later, the headache he developed hours after seeing the movie has not completely dissipated.
“The poor guy has really made the rounds,” observed his longtime neurologist, Nirjal K. Nikhar, referring to the panoply of experts — pain specialists, neurosurgeons, headache experts and neurologists — the 57-year-old retired Freddie Mac senior director consulted. For the past 18 months, a new treatment regimen appears to be working.
“The two big questions in his case are, ‘Why did this happen?’ and ‘What do you do about it?’ ” observed Nikhar, adding that aspects of Wells’s unusual malady continue to puzzle him.
Wells’s problem started in 2002 when he bought a new car. A few hours after driving it off the lot near his suburban Maryland home he developed an unusual headache — a burning sensation in the center of his head as though “someone was sandpapering my brain.”
Wells, who was in good health and had no history of headaches, noticed that when he drove his wife’s older car he had no problem. Fearing the new car had an exhaust leak, he returned it. But when he bought a used vehicle, the same thing happened.
He consulted an allergist, who referred him to a physician at Johns Hopkins Hospital in Baltimore who specializes in environmental health.
The Hopkins specialist told Wells that he appeared to be highly sensitive to volatile organic compounds (VOCs), gasses that are emitted into the air and are found in a wide variety of products or processes. Among them are those used in the building of vehicles, resulting in what’s known as the new-car smell.
These ubiquitous compounds, some of which are not detectable by smell, may increase the risk of health problems in people with respiratory difficulties or those who are unusually sensitive to them. The effects of VOC exposure are related to the particular chemical, the length of exposure and the amount circulating in the air.
Chronic exposure to high levels of some VOCs such as benzene has been linked to neurological damage and cancer. Cigarette smoke and gasoline are sources of benzene exposure.
Wells said the doctor told him that he should try to avoid fresh paint, new carpeting and new cars, all of which are significant sources of VOCs. If he didn’t, he remembers the doctor telling him, his headaches would probably become more severe and prolonged.
For the next several years Wells took pains to follow that advice and remained headache-free.
“I called ahead to a hotel and talked to the manager to ask for rooms that hadn’t been recently renovated,” he recalled. When his family went to Florida on vacation, they stayed in the same condo, which had tile floors. Wells did not buy a new car. And when he rented cars, he asked for the oldest one on the lot and requested that it not be cleaned before he picked it up.
In 2008, the couple bought new living room furniture. Soon after it arrived, so did a severe headache. Wells subsequently learned that the furniture was made of pressed or composite wood. Composite wood often contains formaldehyde, a VOC. The furniture was returned, replaced by items made of solid wood, which contains lower levels of VOCs. This time his headache lingered for several weeks.
Worried that his headaches were lasting longer, Wells consulted a second Hopkins specialist. She told him she couldn’t determine the cause of his headaches and suggested he might benefit from biofeedback, a mindfulness therapy that uses sensors to measure body functions with the goal of reducing pain and stress. Wells tried it briefly but could not find a specialist who used the therapy for headaches.
He then saw Nikhar, who ordered an MRI brain scan, which was normal.
In an effort to treat the headaches, which the neurologist suspected had an “inflammatory component,” Nikhar prescribed increasingly large doses of prednisone, a potent corticosteroid that reduces inflammation but can cause serious side effects if taken long term and at high doses.
Wells said it was hard to tell if the drug worked. On one occasion he parked in the garage at work, then realized the floor had been newly painted; Wells said he developed a headache within 30 minutes. Despite high doses of prednisone and weeks avoiding the garage, his headache lasted two months.
Ill-fated movie night
Wells can’t explain his decision to stay and watch the movie, except to say that he let his guard down. The burning headache began the following day. At first the pain was so severe he had trouble focusing and one night wound up in a local emergency room.
“I remember thinking what have I done?” he said. “It scared the hell out of me.”
In early 2016, Nikhar ordered a second brain MRI. This scan, unlike the first, was not normal. It showed multiple deep white matter lesions of unknown significance. Migraines, multiple sclerosis, and other ailments can cause such lesions.
“No one can say what they mean,” said Nikhar, adding that they are an unexpected finding in a man in his 50s. Wells has since undergone several MRIs that show no change.
For the next three years Wells consulted multiple specialists in an effort to treat his relentless headache: neurologists, pain management experts, neurosurgeons, and a rheumatologist. He tried a cornucopia of medications: drugs to treat migraines, depression and nerve pain, along with muscle relaxants, an antihistamine, pain relievers and sedatives; none seemed to make a difference. Neither did a dozen injections in his forehead that were supposed to relieve pain or several months of acupuncture.
“Nobody said, ‘Hey, it’s all in your head,’ ” Wells recalled. But doctors were baffled that his headaches would last months and uncertain about their origin. Sometimes chronic headaches are the result of a rebound reaction caused by frequent or excessive use of pain medication.
Wells said he was vigilant about avoiding the VOCs he knew might be problematic and his employer was accommodating. When his office was scheduled to undergo renovation, he was moved to an old workspace.
By 2019, his pain had diminished. Wells had started taking a benzodiazepine, a sedative used to treat anxiety, insomnia and panic disorder that Nikhar prescribed.
“How it helps his headaches is not clear,” Nikhar said. “Maybe calming him down relaxes his muscles.” But the neurologist said he does not believe Wells’s headaches are the result of anxiety. “I think the anxiety is there as a result of the symptoms,” Nikhar said. “I don’t think the anxiety is a driver of his headaches.”
Using a benzodiazepine, a class of drugs known to be addictive can be risky, the neurologist said. “You’re conflicted between two factors. You want to help patients but not create a dependency.”
By the end of 2019, Wells’s headache was significantly worse.
“My anxiety really ratcheted up,” he recalled. “I wondered, ‘Is this going to be my life?’ ”
In early 2020 Wells, with Nikhar’s encouragement, made an appointment with a Cleveland Clinic neurologist who specializes in treating headaches.
The appointment was set for the end of March, two weeks after the pandemic shut down travel and the ability to seek in-person, non-emergency care.
During a 30-minute phone conversation, the Cleveland doctor suggested that Wells might be experiencing a phenomenon called central sensitization, in which the central nervous system amplifies pain signals sent to the brain.
The cause of central sensitization is unclear; genetic factors such as a heightened response to pain may play a role. Sometimes there is a precipitating event such as trauma or surgery.
Wells said the neurologist told him that he had seen a few similar cases and that a key objective was to interrupt the cycle.
Shortly before their call, Wells had begun taking a second medication, an antidepressant approved to treat nerve pain that Nikhar prescribed. The Cleveland specialist advised Wells to continue taking the drug, which is used in the treatment of migraines, at higher doses if necessary, to gauge its effectiveness.
Four months later Wells’s headaches were greatly diminished. He continues to take the antidepressant, along with the benzodiazepine, which he uses when the pain flares. So far he said, his headaches have remained “very manageable. I’m trying to take as little medication as I can,” he said, adding that he hopes to stop taking both drugs entirely.
Nikhar has no idea why the drug combination works, calling the treatment “somewhat out of the box.” Central sensitization, he noted, is “well-recognized in headaches.”
Wells’s sole symptom, he added, has been “very specific and consistent over the years” which is somewhat unusual.
Nikhar said he doesn’t know what to make of Wells’s abnormal MRI or whether the lesions are related to his headache or something else.
“In neurology,” he observed, “there’s no end of unanswered questions.”
washingtonpost.com, 25 September 2021