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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. Then came quick shocks, like electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and once more in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense pain around a single eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually begin with abrupt, severe pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She particularly hated being unable to plan social events, 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 simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A thorough patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. 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 life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent episodes are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a