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It was a gloomy Monday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. It was followed by quick jolts, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

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

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. 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 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

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

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, 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 reduces nerve signals.

The official guidelines need revising to reflect a