If you experience chronic near-daily headaches and have been told you have migraines, you may have been misdiagnosed.
Most doctors are not aware of a less common type of chronic headache called new daily persistent headache (NDPH). It’s actually quite easy to diagnose if a doctor (or patient) is aware of it, but most aren’t.
An estimated four percent of Americans suffer from chronic headache, which is defined as having a headache at least 15 days of the month (for at least four hours on those days). Doctors and patients are typically familiar with the more common types of chronic headaches: migraines and tension headaches.
But people with NDPH tend to be misdiagnosed, leading to plenty of unnecessary testing. Many patients will get MRIs and CAT scans, see neurologists, chiropractors, psychologists and even dentists, and will often get no relief from their headaches.
But here’s the distinguishing characteristic of NDPH. Patients say they’ve never or rarely had headaches in the past. But suddenly one day, they start having a headache, which slowly builds up and then just stays with them.
“They can usually recall the specific time and what they were doing when they got the headache,” said Dr. Brian Grosberg, director of the Montefiore Headache Center in Bronx, N.Y.
People with migraines, on the other hand, cannot usually recall when their headaches first began nor do they describe it as continuous from that first day onward. But those with NDPH can have symptoms that mimic a migraine or a tension headache, such as sensitivity to light and sound or nausea, making it easy to misdiagnose.
“It’s important to establish the right diagnosis so that you’re not continually searching for an answer,” Grosberg said.
But there’s another reason an accurate diagnosis helps. NDPH is harder to treat. Understanding that it may take longer to find the right medications to prevent and treat your headaches is important.
NDPH is treated using the same medications that are used to prevent migraines—daily medications like antidepressants and anti-seizure drugs. But they’re less effective and treatment requires a lot of trial and error. Patients who have these symptoms should see a headache specialist rather than their primary care physician. A specialist can also rule out other possible causes for the headache such as the overuse of pain medications, meningitis or other serious conditions.
There’s very little research on NDPH, so experts don’t know what causes the chronic pain. Some research has found that about a third of people with NDPH described an event that preceded the headache, such as a flu or infection, a stressful life event or surgery. But more research is needed.
Laurie Tarkan is an award-winning health journalist whose work appears in the New York Times, among other national magazines and websites. She blogs about the Affordable Care Act for the WellBeeFile. Follow her on Twitter and Facebook.