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Cluster headaches a living 'hell' for Redskins' Terrance Knighton

ASHBURN, Va. -- The pounding began when Washington Redskins nose tackle Terrance Knighton was sitting in class at Windsor (Connecticut) High School about 9 a.m. He was 14 years old and the pain was relentless, forcing him to the nurse’s office, then to a series of doctor visits and a monthlong ritual: pain accompanied by tears.

"I was crying every night," Knighton said. "Everyone thought I was having an aneurysm, and we did not know what was going on. We were thinking the worst."

Eventually doctors diagnosed Knighton with a term that became more popular over the weekend: cluster headaches. They caused Knighton to miss the Redskins’ game at New England on Sunday. Knighton said not traveling to the game was mostly precautionary. Because he's been dealing with the headaches over the past month, he felt another onset. In fact, he tweeted Sunday night that he had spent two days in a dark room.

"I did not want to have an episode on the plane or in a hotel room," he texted Monday.

That’s understandable given the severe nature of these headaches. They are different from migraine headaches, according to doctors. A single episode of a cluster headache does not last as long, anywhere from 30 minutes to three hours. But they can reoccur several times during one day, and the episodes can last days, weeks or months. According to the Cleveland Clinic, they affect fewer than 1 in 1,000 people, and 90 percent of those affected are male.

For the 29-year-old Knighton, the episodes usually drive him into a darkened room. Sometimes he’ll end up in a fetal position, grabbing at his hair seeking any sort of respite.

"On a scale of one to 10, the pain is a 50," Knighton said Friday, a day before he was forced to stay home because of the headaches. "If people research it, they see it’s probably the worst pain you can get. There are times I’ll get these attacks and I’ll be home, curled up in a fetal position and hoping it goes away. My girlfriend, she’s starting to see it. Everybody’s worried when they come back, and everyone panics and is hoping nothing’s wrong with me."

They’re known by another name that suggests Knighton isn’t exaggerating.

"They’re sometimes called suicide headaches because of the severity and disabling nature of it," said Dr. Seymour Diamond, executive director of the National Headache Foundation and founder of the Diamond Headache Clinic in Chicago.

Diamond said football does not cause these headaches, nor do they make them worse or increase their frequency. In fact, Knighton was just a basketball player in high school when they started. Knighton, who has never had a concussion in his seven NFL seasons, said Monday he’s not worried about long-term damage because "they come in cycles and they go away" and said there’s no correlation between football and cluster headaches. Knighton said no doctor has ever told him football would lead to increased episodes or somehow make them worse.

But he also said, "Usually when you get these headaches you want to bang your head through a wall. I’m pretty sure football could do some damage to it, if you do have one [in a game]. I haven’t had to deal with that. I would be skeptical about going back on the field, because it’s so debilitating. It would be hard to concentrate on the game."

Knighton once was afraid to discuss these headaches publicly but has changed his mind because he wants to shine a spotlight on a rare condition. Later in life, he said, he wants to be more involved, whether it’s by donating money or helping in other ways. For now, Knighton just wants to let others know about these headaches. As a young player, that wasn't going to happen. In college, he played with one because he worried how teams would view him once they knew about the cluster headaches.

"There were times I wanted to let the NFL or fans know that I’m going through this and if anyone can help, but I was always so worried about the other side," Knighton said, "and of teams being scared to sign you. But I’m to the point where I saved enough money, I’m ready to make it known and help out. … It’s definitely something that needs to be paid more attention to, because for people like myself who go through it, it’s hell."

Treatments vary, though Knighton said he’s seen 20 to 30 doctors over the years and nothing has worked for him. Oxygen has helped some patients (not Knighton); so have injections of sumatriptan (again, not Knighton). He said sometimes these provide relief but certainly not a cure. He’ll watch videos of others going through an attack, and they do the same things he does, writhing in pain, using oxygen and applying ice packs to their heads.

"With Terrance, you can see the pain in his face," his mom, Rochelle Knighton said. "Eyes are glossy. Tears. He gets very annoyed with noise and light. It’s a matter of not knowing how to eliminate it, stabilize it and really what’s causing it."

Redskins teammate Chris Baker, his best friend and a high school classmate, said, "I remember every day around 10 he’d be in the nurse's office for two hours. I’ve never seen them in action, but I’ve seen him laying down and he’s like, 'Don’t bother me.' He doesn’t want to be around anybody. It’ll go away but when it comes back, it comes back strong."

Cluster headaches arrive like unexpected guests, albeit with some warning signs, so a patient could go a year or much longer without one. It sometimes fools them into believing they’re in remission. The reality, though, is they’re not. It’s almost as if their brain lies on a fault line and it’s unpredictable when these headaches will erupt.

"It is treatable," Diamond said. "I don’t know of any way to stop them. People claim they have miracle weapons for them, but clusters are famous for remissions. People may get it one year and then may be in remission for 10 years. It’s not because of medicine; it’s just the way these work."

It’s hard for Knighton, or anyone with cluster headaches, even to sleep during periods when they reoccur. Knighton echoed what numerous medical websites also state: The rapid eye movement stage can trigger these headaches because of how the brain activity changes. A rough period becomes exacerbated by disrupted sleep.

"For the past month I sleep an hour and a half and I wake up before I reach a deep sleep," Knighton said, "and then I lay back down. So I have a lot of naps more than a deep sleep."

This latest episode bothered his mom more than others. Even Knighton said the headaches he got eight days ago were among his worst; he couldn’t get out of bed and had to miss a practice. Rochelle Knighton said she nearly flew in from Florida to be with him, especially after she couldn’t get him on the phone.

"This time has been my scariest because it affected him as far as traveling and being able to play," she said. "Sometimes he can play through them, but this one being that it lasted longer than most has been scarier. They are getting worse because he’s getting older, and they’re getting worse because it hasn’t been addressed."