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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid stabs, like electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain behind a single eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her father 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, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, 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 robs 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 portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a