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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. Then came rapid shocks, similar to lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, excruciating agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent episodes are managed with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a