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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came rapid jolts, similar to electric shocks. As each class came and went, the pain subsided and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with sudden, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, 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 simple liberties we don't appreciate 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 documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her pain. She believes 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 early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional episodes are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a