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It began on a gloomy Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain erupted behind my one eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony focused on a single eye that reaches its peak 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 sweating. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a