When a headache never goes away

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I get occasional migraines, and the only good thing about the throbbing pain, nausea, and depressed mood is the sense of euphoria that comes when the pain finally lifts. For some headache sufferers, however, the pain never goes away—for months, years, or even decades.

I received a call recently from a relative whose teenage son developed a headache one day that’s lasted two months and counting, causing him to miss his final months of high school. His diagnosis: new daily persistent headache, a wastebasket term given when everything else has been ruled out.

Dr. Elizabeth Loder, chief of the division of headache and pain at Brigham and Women’s/Faulkner Hospital, estimated that about 5 percent of the patients she sees at her clinic have new daily persistent headache. More commonly, patients come in with chronic migraines that result from medication overuse or because a particular drug isn’t working for them or has been prescribed at too low a dose.

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With new daily persistent headache, or NDPH, however, none of the array of migraine medications seems to work, even when prescribed at optimal doses. There’s no known cause such as a head injury, tumor, or seizure condition.

And, unlike the typical headache sufferer, those with NDPH can name the exact day when their headache began—even what they were doing when it started—because they’ve never before had a problem with headaches and suddenly they’re in pain all the time with no relief in sight.

“Last month, I hit the seven year mark with NDPH. I also reached my 40th Birthday. I didn’t really want to celebrate either of them. Do you blame me?” That’s the beginning of a recent blog post written by a mother-of-three named Amy whose blog is devoted to NDPH and promising treatments.

One woman claims her headaches were finally cured with physical therapy; others say they found relief through Botox injections—approved for the treatment of severe chronic migraines.

Unfortunately, there are a host of unknowns when it comes to the condition, including its true incidence—which researchers put at less than 1 percent of the population—its causes, and whether it’s a type of migraine that’s resistant to treatment or a completely separate headache entity altogether.

“About 15 percent of people report having an upper respiratory infection close to the time their headaches began,” said Loder, “and about 10 percent recall a stressful life event.” Some report that their headaches started after a routine surgery. Those statistics are based on case reports from headache specialists who treat the toughest NDPH cases, often referred to them by other headache specialists.

Dr. Todd Rozen, director of the Geisinger Headache Center in Wilkes-Barre, Pa., who has perhaps published the most research studies on NDPH—and gets the most intractable cases—said he believes most of the headaches are caused by one of two things: an immune system malfunction or a neck problem due to hyperflexibility. Certain immune chemicals including cytokines are known to trigger headaches, fatigue, and a general feeling of malaise, and sometimes the body has a hard time re-calibrating the immune system back to its normal resting state after it has been called into action because of an infection, bout of severe stress, or physical trauma such as surgery or a car accident.

For the past several years, he’s been treating NDPH patients for these two problems after evaluating their level of inflammatory chemicals in the spinal fluid and assessing the mobility in their neck. Some patients get treated with anti-viral drugs and antibiotics if they have elevations of a type of cytokine called tumor necrosis factor-alpha; others get physical therapy with a specialized technician or a nerve block treatment if they have chronic neck strain.

“Up until 4 years ago, I would say that I never got anyone better,” said Rozen. “Now I’m getting 50 percent improvement in most patients and have completely cured a few.”

But Dr. Peter Goadsby, a neurologist at the University of California, San Francisco who’s also an expert on NDPH, said it is a vague syndrome without defined causes, rather than a distinct diagnostic entity with clear-cut triggers and treatments. He pointed out that stressful events and viral infections are so common that it’s easy to establish a causal connection to the headaches where none exists. “I think we need to start from a clean slate and work out what’s really going on.”

Most of his patients, he added, do benefit from standard drugs to prevent migraines such as the anti-seizure drug topiramate or a beta blocker if they’re given the appropriate dose and stay on it for at least two or three months.

“I think it’s very important for experts to be very questioning,” Goadsby said, “what we know, what we think we know, what we can prove in studies.” Unfortunately, headache studies get little to no federal funding from large entities such as the National Institutes of Health, so new treatments such as Rozen’s go untested in clinical trials. “Patients are owed that,” Goadsby said.

For the time being, patients with chronic headaches should try standard treatment approaches as well as complementary therapies that involve some form of relaxation therapy, including biofeedback or meditation.

“Any form of relaxation therapy has some utility for some of these types of headaches,” said Goadsby. Unfortunately, only one-quarter of headache specialists said in an American Headache Society survey released Wednesday that they refer patients with chronic migraines and other chronic headaches for non-drug treatments such as stress management, psychotherapy, or relaxation training.

Most importantly, though, those with chronic headaches should try to carry on as best they can with their lives. “Many of those with this disorder are quite young,” said Loder, “and it may seem attractive to put everything on hold until the headaches are fixed, but they may miss out on life milestones and experiences. And sometimes we can’t completely fix the problem.” Doing a half-load of coursework at college, for example, is better than skipping college altogether. “We encourage them to do as much as they can,” Loder added, “despite the fact that they don’t feel well.”

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