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It was a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. Then came quick stabs, similar to lightning bolts. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks usually start with sudden, excruciating agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated 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 recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a doctor researched his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidelines on management advise 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 choices include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a