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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came rapid jolts, like lightning bolts. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that autumn, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around one eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks usually start with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records propose unusual treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a