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It was a dreary Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to 4% 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 a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted 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 understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, 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 small liberties we don't appreciate 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 the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical records propose bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading specialists in treating the condition explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are handled with acute therapy only. More prolonged or more severe bouts require preventative medications 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 head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a