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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my right eye. Then came quick stabs, like lightning bolts. As the school day came and went, the pain eased and then came back with greater intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around a single eye that persists for three hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony around one eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; others have chronic attacks, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually 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 dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Ancient healing texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured 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.

In spite of such advances, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a