Posted by jonny (126.96.36.199) on September 07, 2001 at 16:42:55:
In Reply to: CH article 1 posted by jonny on September 07, 2001 at 16:41:14:
Monday, July 9, 2001
Rare disorder has some writhing on floor in pain
By Kristi Palma
Joshua Sudikoff, 32, woke up one night to what felt like "someone was taking a hot poker and sticking it through my eye -- slowly."
He leapt from his bed and paced the room frantically, gripping his head in agony. His wife reached for the phone to dial 911 as Sudikoff, tears running down his face, curled up in the fetal position on the floor.
Joshua Sudikoff, 32, has been suffering from cluster headaches, also known as "suicide headaches," for four years.
"I didn't know what to do. I didn't know what was happening," said Sudikoff. "I'd never experienced anything like that before."
Sudikoff, of Barrington, N.H., was experiencing his first cluster headache. That was four years ago, and other than some occasional respites that could last a week or a month, they rarely stop.
Cluster headaches are the monster of all headaches, experts say. Some sufferers call it "The Devil" or "The Beast."
They're also often called "suicide headaches," as they come in clusters -- that is, the headaches attack intensely for short periods of time over a cluster of weeks or months, then disappear for several months or years before attacking again. The attacks usually happen when sufferers are asleep and last anywhere from 30 to 90 minutes. They are cyclical -- meaning they are normally patterned, occurring at a typical time of day, month and/or year, depending on the person.
Doctors say there is no cure, though medication offers some relief, and the cause is unknown because of limited research into the headaches due to the fact that they affect only 0.01 percent of the population, or every 69 out of 100,000 people, so little research has been done.
Dr. Richard L. Levy, a neurologist in Exeter, N.H., said his patients tell him they feel "excruciating, boring, intense pain" in one eye. The headaches strike one side of the face and the affected eye usually runs and the lid droops. The nose runs as well. For some, the pain is so great, they thrash objects against their skull and bang their head into a wall.
"I've done that. I've banged my head against the wall," said Sudikoff, who works in the health care field. "I have a huge tolerance of pain and this by far ... nothing compares to it. Nothing."
He said he has never been pushed to thoughts of suicide, but understands why others could be.
"I could see how somebody could go off the deep end," Sudikoff said. "To think that bashing your head can relieve the pain, that should say it all."
Anyone is susceptible to these headaches, said Levy. However, it occurs most often in men between 20 and 40 years old, and while no one knows exactly what causes cluster headaches, doctors say lifestyle seems to be a factor. Levy said alcohol, nicotine, and diet may contribute to cluster headaches. But Sudikoff said he does not drink or smoke and lives a healthy lifestyle.
Dr. Paul T. Gross, chairman of the department of neurology at Lahey Clinic in Peabody, said cluster headaches have not been studied much because there is not enough funding. However, the headaches have been recognized by doctors since 1867. He said there also seems to be a link between stress and type A personalities and cluster headaches. He said he's seen more and more 35- to 40-year-old women in high-power jobs diagnosed with it. There is no genetic link, he said.
"It's very bad," said Gross. "These type of headaches require very specific treatment. Aspirin is not going to work quickly enough."
Cluster headache sufferers are given steroids in the form of a tablet, injection, or nasal spray. The steroids are taken at the time of the pain and works to "break up the cycle" of the cluster, Levy said. Some sufferers also inhale oxygen at the time of the headaches. Novocaine in the form of nose drops works to numb the nose and back of throat in attempt to block the stream of pain going through those areas of the face, Levy said.
When the steroids don't work, sufferers can take anti-epilepsy drugs and blood pressure drugs, Levy said. Medication helps 99 percent of patients, he said. The rest must undergo neurosurgery.
There are even support groups, like the Cluster Heads, a national group whose information base is at www.ch.com, to give sufferers a place to help each other cope. Sufferers also feel a responsibility to raise awareness.
Sudikoff is on a number of medications, but sometimes finds his 17-month-old son to be his greatest comfort. He said he'll sometimes hold the boy and stroke his head slowly rather than harming himself. It keeps him grounded and reminds him to be strong for himself and for his family.
Living with clusters means living with anxiety, Sudikoff said. He is anxious when he goes on trips -- being so far from his doctor, worrying if a cluster will strike, hoping he has enough medication. He's anxious when he goes to work, hoping a cluster will stay at bay while he's out in the world. He's anxious going to bed, thinking, "Is this the night it'll strike?" He said he's learned to meditate, which helps.
"It's so easy to get frustrated and say, 'Why me,'" Sudikoff said. "You just have to remain positive."
Next Story: Cluster headache sufferers share their pain
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