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It began on a dreary Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden sensation bloomed behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, severe agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She particularly 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 most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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

Ancient medical records suggest bizarre treatments for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent 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 recovered.

Despite such progress, diagnosis remains slow. One man's attacks 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 four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing occur 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 common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, 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 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a