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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort around one eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, excruciating agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started 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 worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, 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 simple liberties we don't value until they're gone,” she says. She remembers obtaining 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 first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing records suggest unusual treatments for what modern 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 cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches 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 pulled because dental professionals misunderstood her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a