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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain around one eye that lasts for several hours.

About one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks usually start with sudden, severe agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small 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 described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical texts propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers published the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a