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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain bloomed behind my right eye. Then came quick jolts, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its toll. She especially disliked 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 worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining 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 first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some people.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a