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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick shocks, like electric shocks. As each class came and went, the discomfort subsided and then returned with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain focused on one eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 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 flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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.

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Headaches have been described throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. 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 discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes 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 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. 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 reduces nerve signals.

The national guidance need revising to reflect a