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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As each class came and went, the pain eased and then came back with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that persists for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks typically start with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient 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 spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often mistook 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 exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical healing texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

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

The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are handled with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidance need updating to reflect a