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It began on a overcast Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. It was followed by rapid stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually begin with sudden, severe pain focused on a single eye that peaks within minutes 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, drooping eyelids or face perspiration. There exists the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs 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 attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In 1998, researchers released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional attacks are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a