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It was a overcast Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense pain erupted behind my right eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain behind a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating agony focused on a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only formally recognised by global 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 delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a