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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my right eye. This was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain around a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony around one eye that reaches its peak 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 face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.

National guidance on management 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 choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a