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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky 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 small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical records suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent 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 progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a