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It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation sprang behind my right eye. Then came quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. 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 pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately 1 in 1000 people are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe 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 attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account 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”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a