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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain bloomed behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense pain around a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father 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 concealed her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing records propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious remedies.

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

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading experts in treating the disorder note this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

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

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode passed.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of well-known people.

But consultant specialists argue the guidance need revising 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 cycle determines the treatment.” Brief cycles with occasional episodes are handled with acute therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a