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It began on a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort behind a single eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and men are more often affected. Attacks usually begin with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. 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.

Still, the inability to organize daily activities around erratic attacks 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 incapacitation caused by the worst episodes. “It steals from 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 facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European 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 occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in treating the disorder note this.

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

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a