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It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came rapid jolts, similar to electric shocks. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by global medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in treating the disorder note this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a