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It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my one eye. Then came rapid stabs, like electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with severe pain around one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around a single eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus 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 fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, 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 writings, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

National guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading neurologists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with occasional episodes are managed with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a