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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came rapid shocks, like electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks returned frequently that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often start with severe pain behind a single eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks typically begin with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the figure fell to four percent when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. 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 attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose bizarre remedies for what modern experts would describe 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 folk cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in treating the condition note this.

In 1998, researchers published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a