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It began on a dreary weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation bloomed behind my right eye. This was followed by rapid jolts, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense discomfort behind one eye that lasts up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the figure dropped 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 two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in treating the condition note this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with acute treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a