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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. Then came rapid stabs, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming 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 train, full-on agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort behind a single eye that persists up to three hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Attacks typically start with sudden, severe agony around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties 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 the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured 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 discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a