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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another 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 Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Leading specialists in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted 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 support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short bouts with infrequent episodes are handled with acute therapy alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a