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It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. Then came quick shocks, 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 activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that persists up to several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually begin with abrupt, excruciating pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Support 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 found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a