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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. This was followed by rapid shocks, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain behind a single eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, 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 time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from 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 pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.

But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a