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It began on a dreary weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with severe pain around a single eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently affected. Attacks typically begin with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, similar to many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. 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 took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small 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 portable toilet.

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Headaches have been documented throughout history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only formally recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with abortive therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a