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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Attacks usually start with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as drunken episodes. Support finally came from her father and then from her husband, 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 fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining 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 earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical records suggest bizarre remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by global headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in treating the condition note this.

In 1998, researchers published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need greater education. 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 guided me through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with occasional episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a