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It began on a gloomy weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid jolts, like electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that persists for several hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky 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 small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

In 1998, researchers released the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor talked me through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional attacks are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a