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It was a gloomy Monday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort around a single eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her episodes 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 symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. 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 family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing records suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading specialists in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more 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 early 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need updating to reflect a