The cause, cluster headaches, are mysterious and often misdiagnosed.
They’ve even been nicknamed “suicide headaches” because the pain is so severe, says Matthew S. Robbins, M.D., FAHS, the director of inpatient services at the Montefiore Headache Center in New York City.
“Cluster headaches are typically one-sided and are defined by the activation of the autonomic nervous system,” says Dr. Robbins. “On the same side of the face, patients will experience redness, droopiness of the eyelid, and runny nose, as well as the most severe pain found in medicine.” The most severe pain found in medicine—think about that for a moment.
Approximately one in every 1,000 people will suffer from cluster headaches, and three in four of those are men, says Dr. Robbins. Researchers aren’t sure exactly why men are more prone to cluster headaches than women. Genetic or hormonal factors might be an explanation, says Dr. Robbins, and confusion about the condition means that many men are misdiagnosed.
Because of the runny nose, watery eyes, and the fact that they clusters often occur in the spring and in bunches (hence the name), many patients assume they have an allergy or sinus problem. Then, they are often examined and diagnosed incorrectly by an ear, nose, and throat specialist, Dr. Robbins says. Because the pain sometimes moves down their face into their cheek or jaw, many others will seek help from a dentist. If you think you have them, see a neurologist or headache specialist for treatment.
We asked four guys with cluster headaches to explain how agonizing they are.
“I cocoon myself in darkness…”
When a cluster headache strikes, Jason Anderson, a 42-year-old small business owner from Kansas City, stops everything. “They’re debilitating,” he says. When Anderson has a flare-up, he basically shuts down, sometimes for 24 hours, until the pain subsides. “I cocoon myself in darkness and quiet with comfort foods and beverages,” he says. The attacks are unpredictable. Sometimes Anderson will experience them multiple times a week for several months. He might not have any for as long as a year. It’s been this way since college.
For years, medical professionals who treated Anderson said he had migraines. Eventually he learned that he instead suffers from clusters. “As a man, my experience has been that most people generally don't accept ‘I have a headache’ as a legitimate defense for missing work or poor performance,” Anderson says. “I try to hide my experience whenever possible or use sick time under the name of another more ‘believable’ illness.”
“I was made to feel like a drug addict…”
When Marc Bivens, a 33-year-old attorney in Phoenix, had his first cluster headaches, he was transitioning from high school to college. “After meeting with doctors, the consensus was they were migraines and probably brought on by stress,” he says.
Now, he anticipates them annually. “The most common cycle is every spring – from March to June,” he says. “I get them five times a day, always around the same time of the day – 10 a.m., 3 p.m., 7 p.m., 11 p.m., and the lovely 2 a.m. one that wakes me up already full blown.”
They’ve affected his life in immeasurable ways.
He was prescribed migraine medicine, opioid painkillers, and muscle relaxers, but the latter two made the headaches worse. “Since overprescribing has become such a problem these days, I also have had doctors ask me to take a drug test before they would even meet with me,” Bivens says. “I was made to feel like a drug addict, when in fact I did not want any pain meds at all.”
The migraine medicine was limited by insurance – only six pills were covered over a 30-day period, while Bivens needed five per day to get through the worst of a cycle. Over-the-counter pain medications worked to a certain extent, but this led to stomach problems, and combined with what he calls “the worst pain I’ve ever experienced,” he developed severe anxiety and depression for these months.
He eventually found a doctor familiar with clusters, and with the right treatments, including prescription steroids and Botox injections, he went nearly two years without a headache. Now, they come as they did before, but he has the knowledge, help, and confidence needed to attack them back.
“Sometimes I pound my head against the wall…”
Mike Dionne’s life with cluster headaches began in 1993. “I didn’t know what was going on,” says the 53-year-old business analyst from Williston, Vt. “It felt like someone was stabbing me above my right eye.”
His first cycle lasted about a month, and during that time, he self-treated with over-the-counter headache medication.
When they came back the next year, they were worse, and he sought professional medical help. There was concern that he might have a tumor or an aneurysm, but when the diagnosis came, it was the same as it was for Anderson and Bivens – migraines.
Dionne’s cycles repeated annually before eventually settling out at every two years. During an active cycle, he would experience about three attacks per day.
“When they start, it’s like someone is slowly putting a knife above my right eye – always the same place,” he says. “Lying in a dark room doesn’t really work for me. Sometimes I pound my head against the wall or hit myself with my fist directly on the spot where the pain is coming from. I guess it’s my way of fighting back.”
Eventually, Dionne was referred to a neurologist who was familiar with clusters. He takes oxygen and Imitrex, a nasal spray, to help relieve the symptoms of acute attacks, though the latter is only prescribed in small amounts, which means Dionne is forced to make a choice about whether the pain has become intense enough to warrant depleting his supply.
“If I had to use one word to describe them, it would be 'discouraging' because you feel so helpless when it comes and you know the pain is going to be awful,” Dionne says.
“It robs me of my entire day…”
For more than a decade, Shaun Walker has been dealing with what he believes are cluster headaches, though he still hasn’t received an official diagnosis. “It’s difficult to pinpoint, but it’s aggravating because I wish others could feel it just for a few seconds so they'd know what I'm talking about,” says the 32-year-old who works in advertising in New Orleans.
The pain hits Walker several times a month during an on-cycle. “All you want is for it to go away, but it doesn't,” he says. “It sits and waits and waits.” And it just keeps going. “It robs me of entire days sometimes because I am so miserable,” he says. “It makes me lose time that I can never get back.”
Sleep is the best remedy he’s found, though that can be tricky when, as Walker jokes, you’re experiencing pain that makes you want to put a drill to your head. He’s tried other non-pharmaceutical methods – pots of steaming water, nasal rinses, drinking lots of water, exercising, laying in the dark, sticking his head in the freezer, and more. He says his recent prescription of Imitrex helps with relief, as does BC Powder, an OTC pain reliever.