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It was a overcast weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain bloomed behind my one eye. This was followed by quick stabs, like lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe pain behind one eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang 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 drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.

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

The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and medication until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with infrequent attacks are handled with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a