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It began on a dreary Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind one eye that lasts up to three hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Attacks typically start with sudden, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Still, the failure to organize life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally recognised by international headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a