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It began on a gloomy weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain erupted behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense discomfort behind a single eye that persists for several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily 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 seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain 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 family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a