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It began on a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe pain around a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional 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 definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Leading experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with acute treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a