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It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then returned with greater force. Multiple times that day I left a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, severe pain around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around unpredictable attacks took its toll. 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 remembers obtaining 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 first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms began 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 surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. 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 guided me through oxygen treatment and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are managed with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a