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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain bloomed behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

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

About one in 1,000 people are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient 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 a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “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, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack passed.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a