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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. This was followed by rapid shocks, reminiscent of electric shocks. 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 ran to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, severe pain focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic attacks took its effect. She particularly 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 most severe episodes. “It steals from you of the small 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 facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a calm advisor talked me through oxygen therapy and medication until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional episodes are managed with abortive treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a