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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended pain-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 discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate 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 earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, 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 discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a