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It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain erupted behind my right eye. This was followed by rapid shocks, like electric shocks. As the school day came and went, the pain eased and then came back with greater force. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried aspirin, but the pain remained unrelenting.

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

Cluster headaches often begin with intense pain around one eye that persists for three hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, excruciating pain focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated 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 found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Leading specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a