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It began on a dreary weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort around a single eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more often affected. Attacks typically begin with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor 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 happening and vanishing each day at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief cycles with occasional episodes are handled with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a