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It was a gloomy Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sudden pain erupted behind my one eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches appeared frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense pain around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks typically start with abrupt, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil entity who afflicted his sufferers' heads.

Historical medical texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the condition note this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the a brain region, 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 attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain 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 precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a