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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense pain behind a single eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, 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 episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

National guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a