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It was a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. Then came quick stabs, like lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. 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 class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that lasts for several hours.

About 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, severe agony around a single eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. 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 took clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Historical medical records suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

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 teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a