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It began on a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation erupted behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain behind one eye that persists for several hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after 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 winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a