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It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. This was followed by quick stabs, 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 activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort around a single eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, severe pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, 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 liberties 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 facility.

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Headaches have been described across the ages. “The first description 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 victims' heads.

Ancient medical records suggest bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk cures.

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 intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing 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 results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe bouts 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 head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a