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It began on a gloomy Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day came and went, the pain eased and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms 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 facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing records propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with infrequent episodes are managed with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a