While sipping morning coffee at her kitchen island, Pam Hopkins started feeling strange.
She stood up. The room whirled. She couldn't focus. Her knees buckled. Nausea overwhelmed her as she stumbled to the bathroom.
"I thought I was having a stroke or a heart attack," the University City resident recalled.
Thankfully, she wasn't. Hopkins, 64, was suffering the most common cause of vertigo, especially in people over 50. It's caused by the displacement of microscopic calcium crystals in the inner ear. The condition can be diagnosed, and usually treated, with a series of head movements. The therapeutic maneuvers reposition the crystals — a good thing because the debilitating episodes tend to recur.
"Just Google 'ear rocks' and you'll see the movements," said Hopkins. A Thomas Jefferson University neurologist taught her to do the series of head tilts after her first episode three years ago, enabling her to resume her passion: competitive tennis.
The problem is that most people, including many clinicians, have never heard of "ear rocks," much less the tongue-twisting medical name: benign paroxysmal positional vertigo, or BPPV. Although an estimated 100,000 people a year are diagnosed with it, many cases are missed. And even those like Hopkins who are correctly diagnosed and treated often undergo more tests than experts say are needed.
In February, experts who treat dizziness issued updated guidance aimed at improving the recognition and care of BPPV. Its "health care and societal impacts are tremendous," wrote the committee of the American Academy of Otolaryngology-Head and Neck Surgery.
"When our first guideline came out in 2008, BPPV really wasn't on the radar," said committee chair Neil Bhattacharyya, an otolaryngologist at Harvard Medical School. "Now, I would say it's on the radar screen. But a substantial number of people are still being misdiagnosed or told to 'live with it.' "
BPPV occurs when calcium crystals that normally sit in a little pouch, called the utricle, migrate into one of the inner ear's three semi-circular canals. A head injury, dental work, an infection — or just the normal wear and tear of aging — can dislodge the crystals, called otoconia or canaliths.
Exactly how this interferes with balance is complex, but basically, the misplaced crystals stimulate nerve cells that send false signals to the brain. "This false information does not match what the other ear is sensing, what the eyes are seeing, or what the muscles and joints are sensing," the nonprofit Vestibular Disorders Association explains on its website.
The result is vertigo — a sudden, severe sense of spinning. Just getting out of bed or rolling over can feel like preparation for the famous Exorcist vomiting scene.
In up to half of BPPV sufferers, studies show, the symptoms go away, at least for a while, perhaps because the crystals move to a harmless spot or dissolve. But "this often takes a significant amount of time, and almost 86 percent of patients will suffer interrupted daily activities and lost days at work," the updated BPPV guideline says.
BPPV also contributes to disabling falls in the elderly, studies show.
A number of inner-ear disorders can cause dizziness. But when BPPV strikes, it triggers a burst of involuntary eyeball twitching, called nystagmus. In the 1950s, two British ear specialists figured out how to tilt and turn the patient's head to trigger the characteristic nystagmus. The Dix-Hallpike test, named in their honor, remains key in the diagnosis of BPPV.
It wasn't until 1980 that John Epley, an Oregon ear doctor, demonstrated that the ear crystals could be maneuvered back where they belong, using gravity. Even after he convincingly showed that his "canalith-repositioning" treatment worked, he faced a decade of skepticism.
In recent years, variations of the "Epley maneuver" have been developed, and experts have refined their ability to identify which ear — and which canal within that ear — is a problem.
"The Epley maneuver works for the posterior canal, which is most commonly affected," said Wendy Webb Schoenewald, a Doylestown physical therapist who specializes in treating inner-ear disorders. "But we do a different therapeutic maneuver for each of the canals."
The new guideline says that when the diagnostic maneuvers confirm suspicions of BPPV and the patient has no inconsistent symptoms (such as paralysis, a sign of stroke), then the clinician should not order X-rays, an MRI, or tests to assess inner-ear function. Because unneeded studies are often performed, the price tag just to diagnose BPPV is nearly $2 billion a year, the experts estimate.
However, their guideline does not discourage the use of a high-tech aid that Schoenewald has invested in: $10,000 video binoculars worn by the patient during the maneuvers. The infrared glasses magnify and record the patient's eye movements so Schoenewald can watch them on a computer screen, and later replay the video to analyze the telltale twitches.
"The goggles make us more accurate," she said. "With these patients, you don't want to move them a lot and make them sick."
Ann Marie Shumsky, 53, of Willow Grove was a challenging example. Years ago, she had to give up working as a medical lab technician because of chronic migraines. Research suggests migraines can damage the inner ear, predisposing the patient to ear rock slides.
Early this year, crippling dizziness began hitting Shumsky several times a day, sometimes followed by a migraine. Her neurologist sent her to Schoenewald in March.
"Last night, at the bottom of the steps, the vertigo hit me. I fell down and just sat in the foyer. Then I crawled to the couch and stayed there," Shumsky said as she and her husband, Perry, sat in Schoenewald's clinic on Ferry Road.
After donning the black goggles, Shumsky lay on an exam table and let Schoenewald guide her through the diagnostic and therapeutic maneuvers. First, Shumsky went from sitting to lying down, with her head turned to one side and tilted back off the edge of the table. Then came similar moves, with the addition of a "supine roll" — she bent her knees and rolled from her back to her side.
Schoenewald kept asking Shumsky to gauge her dizziness on a scale of 10.
"That was an 8," Shumsky said, trembling after a nystagmus-provoking roll that bolstered Schoenewald's diagnosis of crystals in the posterior canal of the right ear.
Four days later, Shumsky said by phone that the vertigo was "about the same." But a week after that, after another therapy session, she felt better.
Although Schoenewald said most patients need only one or two sessions of "vestibular rehabilitation," Shumsky needed more because of her migraines. After seven weeks, her vertigo episodes had mostly subsided.
"Wendy gave me exercises to do at home, and she's going to teach me how to do the maneuvers on my own," Shumsky said. "It's helping. I'm a lot better than I was."