T.S. Eliot called April the cruelest month.

For Luke DeSimone of the North Side, that month is February. That's when the "beast" comes like clockwork, year after year and stays until April or May. Each night, just as he slides into deep slumber, it blasts him with excruciating pain behind his right eye. Then, roughly 45 minutes later, the pain vanishes almost as quickly as it arrived. Until the next day.

	Andy Starnes, Post-Gazette Luke DeSimone has suffered from cluster headaches since he was 16. Click photo for larger image. Related articles More information on cluster headaches 'I scream until I lose my voice'

For Frank Weeden of Shelbyville, Tenn., it arrives during what used to be his favorite season, the fall. Frequently it has hit at exactly 12:32 a.m.

"Ninety percent of the time, it feels like someone walked up to me, took a screwdriver and jammed it up in my right eye and kept digging it around for 20 minutes.''

DeSimone and Weeden have cluster headaches, poorly understood, widely misdiagnosed episodes of stabbing pain that usually affect one side of the head. Most sufferers have headaches that hit repeatedly over a few weeks or months and then disappear. Because most of these show up at the same time each year, they're mistakenly blamed on seasonal allergies or sinus problems, but there is no known cause.

Cluster headaches are far less common than migraines, occurring in less than 1 percent of the population. More men than women have them, and they usually emerge between adolescence and middle age. Most medications work too slowly to treat cluster headaches, although advances are being made to find better ways to prevent or reduce the pain.

While they're not life-threatening and usually cause no permanent structural changes in the brain, the excruciating pain can interfere with work, relationships or lifestyle and has driven some people to suicide.

DeSimone, 41, co-owner of Doug's Market on the North Side, has experienced these since he was 16. "When I was young, even in my 20s, I never knew what they were. I would eat tons of Advil. It never took it away. I would beat my temples. I'd scream and cry.''

He finally was diagnosed by a neurologist at Allegheny General Hospital, but it was the recent discovery of a Web site, clusterheadaches.com, that introduced him to a worldwide support network that has helped him cope with this rare condition.

That's how he met Weeden, 35, president of a small manufacturing company. Sometimes they talk each other through these headaches over the phone. They hope to meet for the first time at a convention in Nashville July 16-18, organized and supported by the Organization for Understanding Cluster Headaches (O.U.C.H), the nonprofit site created by the people from clusterheadaches.com.

"There's an instant understanding,'' Weeden said of the people he's met over the site, affectionately called clusterheads. "They just know what you've been going through.''

The Web site was created in 1998 by Daren (D.J.) Johnson, 37, of Wichita, Kan., who started having these episodic headaches at age 18. When he couldn't find anything on the Internet about his condition, he started his own site.

"I had never met anybody else with the headaches,'' Johnson said. "I wanted to know I wasn't the only one out there.''

More than 2.5 million people have visited the site since then.

About 20 percent of sufferers have chronic cluster headaches like Chuck Setzco, 54, of Greenville, N.C. His pain occurs several times a day. They began episodically 26 years ago, but became chronic seven years ago.

"Right now I'm in a real bad cycle that has lasted since July. I've been getting six to 12 hits a day. That has just destroyed any sort of normal life. I have not been able to work or do much of anything.''

He owned a business installing satellite systems and has been trying to collect disability benefits. He's been denied three times. "It's not listed as one of the eligible reasons to be disabled. They say it's just a headache. It's not just a headache.''

Despite the support of his family of four children, his morale had dipped so low last fall that he contemplated suicide. "I had planned it out. I had a method of doing it. I had set up a date.''

He's not sure what prompted him to go on the Internet three days before the planned date. But that's when he discovered the cluster headaches site. "If I had not found this Web site, I probably would not be here.''

Setzco, too, is eager to meet his cyber buddies in Nashville, in particular a chronic sufferer flying in from Norway.

Looking for a cause

Researchers are trying to pin down a cause for the headaches. Scientists at the Institute of Neurology in London in the late 1990s found that there are structural differences in the brains of cluster headache sufferers compared to other folks. They found an increase in grey matter in the hypothalamus on the side of the brain where the pain occurred. This is the part of the brain associated with circadian rhythms, which may explain the cyclical recurrence.

Diagnosis is based on symptoms and a physical exam. Tests, including magnetic resonance imaging, may be done to rule out other biological causes.

Available treatments may work for some, but not all. Inhaling oxygen and taking medications that can be absorbed quickly are the first line of defense. Breathing 100 percent oxygen through a tight mask for up to 15 minutes provides relief for some people. Raising blood oxygen levels relaxes constricted blood vessels, providing quick relief.

Many patients report a reluctance by their doctors to prescribe oxygen because too much can damage the lungs, causing permanent scarring. Setzco, who is prescribed oxygen that he says eases his pain half of the time, said many patients seek out tanks of industrial oxygen used in welding when their doctors won't prescribe it.

Medications used for migraines that cause constriction of arteries in the brain, such as triptans (for example, injections of Imitrex that work within 3 to 7 minutes) may help. Some of the drugs used to prevent migraines, such as methysergide, may be beneficial because they constrict blood vessels and reduce inflammation. Calcium channel blockers block the release of neurotransmitters (chemicals in the brain that stimulate nerve cells) involved in pain. Lithium also is prescribed.

Surgical interventions may involve nerve blocks and gamma knife radiology.

Sufferers are trying to spread the word about this condition so others get proper diagnosis and support. After Setzco began having the headaches 26 years ago, he was in psychiatric treatment for six years because doctors thought he was making up the episodes to get attention. (His sister, a nurse, finally nailed the diagnosis). His oldest son, a film student, has plans to make a documentary about the condition.

DeSimone said he's been helped so much by the Web community that he's having 500 bumper stickers printed up to promote the site.

"It's changed my life,'' he said. "These folks give me unconditional support.''