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It was a overcast Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain around a single eye that persists up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a