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It was a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain erupted behind my right eye. Then came quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped 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 floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a major medical publication, 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 symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief bouts with occasional episodes are handled with abortive therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a