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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. 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 hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, excruciating agony around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “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 teens, like many causes, made things more intense. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally 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 key blood vessel which delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.

National guidelines on treatment recommend that sufferers are offered high-dose 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 apparently soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short bouts with infrequent episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The national guidance need revising to reflect a