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It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a intense pain sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon forming an annual 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-on agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe discomfort behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts 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 two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol 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 family often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties 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 facility.

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Headaches have been described across history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 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 teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode eased.

National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But leading neurologists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a