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It began on a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. It was followed by quick stabs, like electric shocks. As each class came and went, the discomfort subsided and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried paracetamol, but the agony remained unrelenting.

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

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

About 1 in 1000 people suffer by the condition, and males are more often affected. Attacks typically start with abrupt, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. 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 paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account 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 formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key 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 triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

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

Specialists 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 head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches 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 molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and medication until the attack passed.

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

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with acute therapy alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. 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 signals.

The official guidance need revising to reflect a