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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As each class came and went, the discomfort eased and then returned with increased intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain around a single eye that persists for three hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually begin with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient medical texts suggest unusual treatments for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen therapy and drugs until the attack passed.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

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 duration of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a