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It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp pain bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, 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.

Cluster headaches often begin with severe discomfort behind one eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; some patients have chronic attacks, characterized by the lack of long pain-free periods.

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

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, 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 liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant neurologists believe the guidance need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a