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It began on a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my right eye. Then came quick shocks, like lightning bolts. As each class came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain behind one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder 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 brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from 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 misinterpreted her pain. She believes dentists 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 attack in 2021; a reassuring volunteer guided them through oxygen treatment and medication until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle dictates the approach.” Short bouts with occasional episodes are handled with acute treatment alone. More prolonged or more intense bouts 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 side of the head where the pain is that decreases nerve signals.

The national guidance need revising to reflect a