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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with increased force. Multiple 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 paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain behind one eye that persists up to several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked 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 simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Brief cycles with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a