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It began on a gloomy weekday in the 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 electric shocks. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain behind a single eye that persists for three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe pain around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the lack of extended 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. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest unusual treatments for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive account 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”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent experts in treating the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a