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It was a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp sensation sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to plan daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre treatments for what some observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious cures.

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

The disorder were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks started in 1986 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 symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short cycles with occasional episodes are handled with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a