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It began on a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden pain erupted behind my right eye. Then came quick stabs, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “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. Alcohol in her adolescence, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms 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 described throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical medical texts propose bizarre treatments for what some experts would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, 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 deactivation when they felt better.

Despite such advances, identification 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 finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes 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 attack in 2021; a calm advisor talked them through oxygen therapy and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are managed with acute therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a