"They can break you—make you question wanting to be here."
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The first time Ashley Hattle had a cluster headache attack, she was 18 and at her summer job, on the lifeguard stand. “It basically came on like a brain freeze—and stayed,” she says.
She spent an hour and a half on her back on the cold cement poolside, trying to focus on anything but the searing sensation behind her right eye. Finally, the pain relented, only to return again at the same time the next day, and the next day, and the next, for two weeks.
For the most part, she’d rate the agony of each attack at a ten on a scale of ten. “Around 45 minutes in, it reaches this point in pain where you stop breathing for a second,” says Hattle, now 29, a medical writer and author of the book Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man. “The pain is so shocking. There’s no way anything else in life could feel worse than that. This is the feeling of death, only you don’t die.”
Though the condition itself isn’t fatal, the extreme pain can lead to devastating consequences—cluster headaches are also called "suicide headaches."
One man, who had his first attack at night, jumped out of bed convinced he’d been shot, says Brian McGeeney, a Boston Medical Center neurologist, headache specialist, and assistant professor of neurology at Boston University School of Medicine.
The patient grabbed his gun, began hunting for an intruder, and called the cops—who took him to the ER.
A patient of Wake Forest Baptist Medical Center headache specialist Juline Bryson made the reverse trip. When an attack led him to scream, pace, and curse during an appointment with a physician who didn’t know about the condition, he was carted away in a police cruiser.
Cluster headaches can develop at any age, occur in men more often than women, and strike out of nowhere, always on one side of the head (though sometimes the side shifts from attack to attack).
Migraines might rank as the most common headache, affecting about 12 percent of the population, as compared to the estimated 0.4 percent of men and .08 percent of women who have cluster headaches. But due to their severity, cluster headaches are particularly debilitating.
Eric Dawkins, 36, drives a truck for a lumber company—except for the days he’s sidelined by cluster attacks he describes as “excruciating, almost like someone hitting me in the head with a hammer and nails.” Over the course of three years, he’s missed up to six weeks of work. Last summer, he spent about a week in the hospital, where even morphine couldn’t alleviate his symptoms.
Speak to a clusterhead, as they call themselves, and you’ll hear details about each person’s “cycle.” Most have active periods once or twice per year, during which they have one or two attacks daily for a few weeks or months. In between, months or even years can pass pain-free.
Hattle, for instance, once had two annual periods of pain, in the spring and fall. Treatment has eliminated her spring cycle, but each October, she knows she’ll be hit with daily cluster episodes through approximately mid-January. She’s engaged to a man who has chronic cluster headaches, meaning his cycles last a year or longer with no intermittent days of relief.
Dawkins has his cycle in the summer. His attacks, as is often the case, tend to come at night. Unlike migraines, patients with cluster headaches feel agitated, driven to move. During his cycle, Dawkins will find himself taking hot showers—the steam seems to offer a distraction—then pacing the house from 1 to 3 am.
The fact that active cluster periods strike seasonally and around the same time each day has offered scientists some insights into the brain changes that bring them on. It’s not clear why some people get them or what sets them off—unlike migraine, cluster headaches seem to have no external triggers, though alcohol can bring on an attack during an active period, McGeeney says.
But researchers have begun to identify what Yale Medicine headache specialist Deena Kuruvilla calls “synchronized abnormal activity,” connecting three circuits of the brain: the hypothalamus, trigeminal nerve, and autonomic nervous system.
Brain scans of patients in the “on” portion of their cycles have revealed altered activity patterns in the hypothalamus, which controls circadian rhythms.
The trigeminal nerve—which carries sensations from the face to the brain—also turns highly sensitive, McGeeney says. Specifically, neurons that relay pain signals along the branch of the nerve that leads directly to the eye fire up for no apparent reason.
One theory holds that dysfunction in the hypothalamus enlarges the carotid arteries, the large vessels in the neck that carry blood to the face and brain, which then press on the nerve and trigger the throbbing, Kuruvilla says.
Nearby fibers in the autonomic nervous system, which controls unconscious systems like blood pressure and perspiration, also switch on irregularly. As a result, people in the midst of an attack also tend to have a single droopy eyelid, bloodshot eye, and stuffed-up or runny nostril on the same side as the pain. That half of their face may also swell or sweat.
Getting an accurate diagnosis is critical in managing the severe pain of cluster headaches, McGeeney says. For one thing, it’s critical to rule out life-threatening conditions like brain aneurysms, which may cause similar symptoms—meaning anyone with severe head pain should seek immediate medical treatment. Cluster headache is so rare that some doctors, even neurologists, aren’t familiar with the symptoms, delaying the process. (Hattle’s diagnosis, for instance, took seven years.)
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In the meantime, patients may be told they have migraines. Some have their pain diminished or dismissed entirely, leading them to “decouple,” as McGeeney puts it, from the medical system. If they stay, they may undergo potentially harmful and unnecessary treatments. Before he started seeing Kuruvilla, Dawkins had several teeth extracted and took medications for what he was told was a severe sinus infection. Some people with cluster headaches receive opioids, which come with serious risks and do nothing to relieve their pain, Bryson says.
What does work, at least for many people, is a three-tiered approach. Preventive medications, which include blood-pressure or anti-seizure drugs, help ward off future cycles and attacks. High doses of melatonin—about 10 milligrams—may also relieve pain and help patients sleep, Kuruvilla points out.
Because preventive drugs require time to build up in the body, doctors may also offer a transitional treatment that slows nerve signals in the meantime—for instance, a course of steroids or an occipital nerve block, an injection of a solution containing steroids or other drugs into the back of the head.
Finally, fast-acting therapies can halt active attacks in their tracks. This includes injections or nasal sprays (not pills, which take too long to kick in) of a drug called sumatriptan, also used to treat migraines. Inhaling high-flow oxygen through a special mask also offers a near-instant break.
Though they tame pain for many people, each of these so-called abortive treatments has its drawbacks. Insurance companies may limit patients’ doses of sumatriptan, and taking the injections too often can lead to rebound headaches. And though oxygen has been shown to be effective in interrupting attacks, Medicare, Medicaid, and most other insurance companies don’t cover it, McGeeney says.
Research funding for cluster headaches has lagged far behind that for migraine, he notes. Still, some promising newer treatments are under investigation. This includes medications that act as antibodies against an inflammatory molecule called CGRP (calcitonin gene-related peptide), implicated in migraines and potentially involved in cluster headaches as well.
Another new approach involves placing a small nerve stimulator in the mouth. When activated, the device sends electrical impulses to a bundle of nerves behind the nose called the sphenopalatine ganglion, which plays a key role in transmitting pain signals. In one recent study, these so-called SPG stimulators relieved pain in two-thirds of the cluster headache patients who tried them.
Desperate patients have also discovered treatments of their own—including hallucinogens. One wrote a blog post in the 1990s about the relief he experienced after tripping on LSD. Others tried it, along with psilocybins or psychedelic mushrooms, and found their attacks switched off for weeks.
In 2006, Harvard researchers published a paper in journal Neurology describing patients’ experiences. In the meantime, several other studies—including one of a non-hallucinogenic form of LSD—have provided some support for their effectiveness. But these drugs’ schedule 1 status prevents doctors from recommending them.
An entire patient advocacy group, Clusterbusters, was formed in 2002 largely to promote research into these drugs as therapies, as well as to support and educate (McGeeney now serves as a medical adviser, and Hattle is on the board of directors.) The organization and its president Bob Wold, who also has cluster headaches, achieved a major breakthrough at the end of 2016: A Yale trial of psilocybin began recruiting patients through the Veterans Affairs Hospital in West Haven, Connecticut.
McGeeney believes physicians who treat cluster headaches have much to learn from patients’ experiences, and makes a point of both attending Clusterbusters’ annual meeting and taking people with the condition to speak at medical conference. Supportive and knowledgeable doctors who offer comprehensive management approaches—as well as understanding friends and family—go a long way toward making life with cluster headaches bearable, patients like Hattle and Dawkins say.
“Do what you can to keep support by your side and keep pushing and keep being strong because they are the type of headaches that can break you down and make you question wanting to be here,” Dawkins advises those who cope with the condition. “I’m thankful for my wife, thankful for having three beautiful kids, and having reasons other than just myself for getting up and keeping going in the mornings.”