🔗 Share this article

It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain around a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient healing texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and drugs until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently soothes the bouts of some individuals.

But consultant specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a