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It began on a dreary weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain bloomed behind my right eye. It was followed by quick jolts, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort around one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually 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 time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning 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 first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised 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 delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a