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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe pain around one eye that persists up to several hours.

Approximately one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to organize life around erratic attacks took its effect. She especially 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 incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris'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 operations before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority 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 misunderstood her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of some individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are handled with acute treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined 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 discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a