Oxygen Therapy Can Help Cluster Headaches

Dec. 9, 2009— -- "It feels like a burning hot poker being shoved through your eye while an elephant stands on your temple, while someone is punching you in the back of the head and pulling on your hair," said Justin Ott, 31, when describing the pain of a cluster headache.

Ott has suffered from cluster headaches for 10 years, and was motivated to chronicle the debilitating pain -- sometimes called a "suicide headache" -- in a documentary film.

Doctors estimate only 0.3 percent of the population suffers from cluster headaches, and that men are much more likely to be affected.

"From when you first feel it start, and when it comes to full strength, it's five minutes, maybe," said Ott, a writer, producer, director and cinematographer from Weehawken, N.J. "Everybody's different, but if left untreated it can go on for 30 minutes to 60 minutes."

Now, new research suggests that sufferers like Ott can take advantage of a relatively simple treatment to help control the excruciating pain of cluster headaches -- a treatment called oxygen therapy.

Once a person feels a cluster headache coming on, he or she can often stop the headache in its tracks by breathing with a high-flow oxygen face mask.

Oxygen therapy has been used by some headache specialists for 30 years, but has, until now, been considered experimental because there have been no clinical trials proving its effectiveness. Researchers in the United Kingdom treated 76 adults with either high-flow oxygen or a placebo of high-flow normal air for 15 minutes.

Their study, published Tuesday in the Journal of the American Medical Association, found that 78 percent of those on oxygen reported immediate relief compared to only 20 percent receiving the placebo.

Dr. Allan Purdy of the Queen Elizabeth II Health Sciences Center in Canada said that he thought the research was an "excellent study… an evidence-based trial to confirm what we have known and used in practice for years."

Although the study was one of the first to investigate using oxygen to treat cluster headaches, Ott and other cluster headache survivors have taught each other to use the treatment for years.

"Oxygen really, is the best thing. If I'm at home and I get an attack, that's my first thing, is the oxygen," said Ott. "I have tanks all around my house."

Cluster Headaches Hard to Diagnose, Treat

Ott says he also takes anti-migraine drugs to "abort" the headache and more medication to suppress the cycles, or "clusters" of cluster headaches. They are called cluster headaches because sufferers typically get them several times a day during month-long bouts.

"They come at the same time every day. You can set your watch to it. It's different with every cycle. I'll get my 10:15 a.m., every day in a cluster, then 2:00 a.m. every day in another," he said.

Ott used to get 8-week-long cycles of headaches three times a year. Now with medication, he gets two cycles or clusters a year.

But he says it was a long road. It took six different neurologists, several hospitalizations that gave him no relief, medications that made him gain 40 pounds or had memory side effects, that endangered his job before he found a tolerable treatment plan with Dr. Larry Newman, a neurologist at St. Luke's-Roosevelt Hospital in New York City.

Struggling With a Rare Diagnosis

"The first eight months before I had any diagnosis were hell," said Ott, who said primary care doctors misdiagnosed his pain as sinus trouble. "All the first neurologist gave me was Vicodin. It kept me from throwing myself out the window."

Cluster headaches are sometimes referred to as "suicide headaches" because some people have taken their own life to end the severe pain.

"You're irrational because the pain is so bad," explained Ott. I'll be banging my head against the wall, biting my arm, or pulling my hair… it's like you're possessed and you will do anything to stop the pain."

Dr. Robert Shapiro, of the University of Vermont, affirmed that "cluster headache attacks are widely regarded as the most severe form of human pain known."

Yet, Ott said his doctors never told him about using oxygen, but fellow cluster headache sufferers shared the technique on message boards at Clusterheadaches.com

"You have to take your own care into your hands," said Ott. "My doctor said the amount of time spent on cluster headaches in medical school is a half an hour, maybe."

ABC News' Michelle Schlief contributed to this report.