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It began on a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by quick shocks, like lightning bolts. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense pain around a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks usually begin with abrupt, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan social events, 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 steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: 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 referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a