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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid jolts, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with intense pain behind a single eye that persists for three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical records propose bizarre treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global headache societies in 1988. From the 1960s to the late 1990s, they were thought 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, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known people.

But leading specialists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a