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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around a single eye that persists up to three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value 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 described throughout history. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts propose bizarre remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

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 intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in diagnosing the condition note this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists believe the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are managed with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a