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It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by rapid jolts, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, severe pain focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients reported suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning 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 first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical healing texts propose unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a major medical publication, showed activation 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. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a