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It was a dreary weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. Then came quick jolts, like lightning bolts. As each class progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind one eye that persists for several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family 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 significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing 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 common headache conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. 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 calm volunteer talked them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But consultant neurologists believe the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a