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It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical 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. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack passed.

Official guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a