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It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in the 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-blown pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort around a single eye that persists for three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain around one eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor 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 causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst 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 facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from 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 propose unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading specialists in treating the condition explain this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need greater education. When another patient 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 volunteer guided me through oxygen treatment and medication until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with infrequent episodes are managed with acute therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a