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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming 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-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with abrupt, excruciating agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes 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 symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of 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 sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a