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It began on a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. Then came quick shocks, like lightning bolts. As the school day came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its toll. 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 children during the paralysis caused by the most severe episodes. “It robs you of the simple 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 described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are managed with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need updating to reflect a