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It began on a overcast Monday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. It was followed by quick jolts, similar to lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically begin with abrupt, severe agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation 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 major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Ancient healing records suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international medical 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. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with infrequent attacks are handled with abortive therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a