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It was a gloomy weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sharp sensation sprang behind my one eye. It was followed by rapid jolts, like lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind one eye that lasts for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, like several 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 relatives often interpreted her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical medical texts suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings 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 prominent medical publication, showed activation 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 delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a