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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense discomfort behind a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes 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, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One research paper 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 bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes 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 pain, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some people.

But consultant specialists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged 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 bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a