CHICAGO (CBS) — Imagine having a headache that doesn’t go away. It’s not a migraine, but something else that’s often misdiagnosed.

As CBS 2’s Mary Kay Kleist reports, the never-ending headache can strike people suddenly.

Tonya Winters Hopkins said her daily headache starts “getting out of the bed, before my feet even hit the floor, my head is pounding.

Life has been that way for her for the last three years.

“Everything is really bad when your head is pounding all the time,” she said.

Rachel Frishberg knows. She’s had a headache for two years and, like many patients, remembers exactly when it started.

“It was a Tuesday afternoon. The headache came on. I didn’t really think much of it,” Frishberg said.

Hopkins and Frishberg suffer from what’s called “new daily persistent headache” or NDPH.

“I was happy to hear it, because it gave a name for what I was going through,” Hopkins said.

Tonya believes she might have seen as many as 15 doctors before getting a diagnosis.

Doctors don’t know the cause, and they often misdiagnose the problem as sinus pain, eye strain, or even Lyme disease.

The uncertainty can often lead to a lot of unnecessary testing. Dr. Merle Diamond — who runs a Chicago headache clinic — said, usually, these are patients who never had a problem with headaches before.

“It’s like having a bad migraine every day, and it never stops,” Diamond said. “So you go from being a healthy individual to somebody who has an illness.”

It’s not unusual for a persistent headache to start with an acute viral illness. Hopkins’ began with pneumonia

“The headache doesn’t leave when the illness does, so you’re left with headache symptoms,” Diamond said.

Diamond has treated Hopkins with a combination of three drugs, and she’s better now.

“I would say I’m having a lot more good days than bad,” Hopkins said. “I would say I’m probably 75 percent better. … So there’s still room for improvement, and eventually no medication at all for me will be ideal.”

But Frishberg, who is not a patient of Diamond’s, has not been so lucky. She’s taken 15 different drugs. So far, nothing has helped.

“I am hopeful that this will either go away as quickly as it came on … or we’ll find some treatment that will help regulate it, so that I can go back to work,” she said.

Patients with persistent headache are treated with everything from painkillers to antidepressants, and even blood pressure medication. Changes in diet and restricting caffeine intake can also help some people.

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