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It began on a dreary weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. Then came rapid stabs, like lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain around one eye that lasts up to three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently affected. Attacks typically begin with sudden, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her attacks 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 dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around erratic pain took its toll. She particularly 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 paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical healing records propose unusual treatments for what modern observers would classify as a migraine. In the middle ages, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a