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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating 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 associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “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 teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky 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 recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records suggest unusual treatments for what some experts would classify as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common 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 signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a