EUGENE, Ore. - Every night, like clockwork, Cindy Reynolds heads to her guest bedroom in her home to escape the pain.
"It's sporadic, instant and excruciating," she said. "I think the best way to describe it would be to imagine a brain freeze, milkshake headache."
Inside the room sit two oxygen tanks. She said it's the only thing that makes her feel better.
"If I were to have an attack outside of my oxygen tanks, it's just way too painful," she said.
Reynolds suffers from a neurological disorder called chronic cluster headaches.
Unlike a regular headache, neurologists say only four in 1,000 people suffer from them.
"It will only last 30 to 90 minutes," said neurologist David Lippincott. "It's a very severe headache and it will usually occur at the same time every day."
He said the pain can be equal to child birth in women and is usually controlled with oxygen.
"It's so severe that some patients can really have psychiatric problems because of the severity and the uncertainty about how many days in a row am I going to have this."
Because they're so rare, they're sometimes hard to diagnose.
"It's unusual and there's plenty of physicians who aren't educated about this," said Lippincott.
Right now there's little funding for research to find a cure. But Reynolds and other sufferers are petitioning Congress to change that.
Next week, she's heading to Washington D.C. with the group Alliance for Headache Disorder Advocacy to share her story with legislators.
"I wanna say we want to stop being marginalized through the headache term. It isn't an Advil situation," she said.
She wants people to learn it's not just a headache, but a debilitating illness that can affect your whole life.
"The term immediately makes you think that this person should just leave the room, take two or three Advil's and quit whining."
She hopes her pain and suffering will end and more funding will help find a cure.
"It's a slow process, but it's the right process," she said.