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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. This was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort behind one eye that lasts for several hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs 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 portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. 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 global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Leading specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes 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 treatment and drugs until the attack eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a