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It was a gloomy weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. Then came rapid stabs, like lightning bolts. As the school day came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe discomfort around a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically 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. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough 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 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 simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short cycles with infrequent attacks are managed with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a