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It began on a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like several causes, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis 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 recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised by global medical 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 major blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are handled with abortive treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of 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 signals.

The official guidelines need revising to reflect a