Woman's 20-year headache finally gets a diagnosis

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Headaches: Getting the right diagnosis

See how getting the correct diagnosis saved one woman from a continuous headache that lasted 20 years

For nearly 20 years, Stephanie Bross struggled with debilitating headaches.

“I’ve had a headache pretty much every day, and it just varied in severity – whether it was kind of a low-key one that I walked around with or more intrusive,” said Bross, 49, who lives on Long Island.

Bross, who has two children, tried multiple medications; she changed her diet and even went to physical therapy.

Doctors didn’t have an answer for her. Last year, the headaches became so bad, her balance became unsteady. After breaking her ankle, Bross realized she needed to get to the root of the problem.

She went to Dr. Larry Newman at the Headache Institute at Roosevelt Hospital in New York City – a decision she said has changed her life.

“I left with the prescription for a medication I vaguely heard of before, and filled it, took it – and I emailed (right away) saying either I’m the most suggestible person in the universe, or you’re right,” Bross said, laughing. “It literally started to work on the first dose.”

Newman prescribed indomethacin, a non-steroidal anti-inflammatory drug (NSAID), which is used to treat moderate to severe pain, usually caused by arthritis.

So why did it take so long for Bross to find relief? Newman said the rare type of headache that Bross suffers from is often misdiagnosed.

“The American Headache Society lectures all over the country about hemicrania continua and other headache disorders, but if the doctor is rushed and doesn't ask about the one-sided headache, they're not going to make the diagnosis,” Newman said.  “So you need to take the time to ask the right questions and know what to do with the answers once you have them.”

Hemicrania continua is an uncommon type of headache that doesn’t stop. Patients are often diagnosed with a migraine or cluster headaches because some of the symptoms are so similar.

Symptoms include dull pain on one side of the head, mixed with periods of severe, shooting pain, eye-lid droop, watery eye and reddening of the eye on that side, and a stuffy nose.

Newman said awareness is important so that researchers can better study what causes this condition.

“It's treatable,” Newman said.  “And if it's treatable, you can take a patient that is devastated by this condition and give them their life back. Not only does the bad headache go away, but the underlying low level discomfort that's always there goes away.”

Bross said she has more energy now, so she’s able to spend more time with her family.

“We just took a trip to Alaska – I don’t have to wory about hiking, or doing physical things with them, whereas before I would have been concerned about balance,” Bross said. “So I can fully participate in the stuff my family does.”