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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. It was followed by rapid stabs, like electric shocks. As each class progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that lasts for several hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “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, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize life around erratic attacks took its toll. She particularly hated being unable to plan social events, 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 steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode 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 spirit who afflicted his victims' heads.

Ancient medical records propose bizarre treatments for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in treating the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features 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 go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional attacks are managed with acute treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a