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It began on a gloomy Monday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came rapid shocks, like lightning bolts. As each class came and went, the pain subsided and then returned with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain around a single eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks usually begin with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But leading neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a