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It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind one eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks typically start with abrupt, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

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

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, 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, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a