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It began on a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October 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-on pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain around one eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks 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 symptoms worsened through childhood. Alcohol in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, 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 neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Ancient medical records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

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

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidelines need revising to reflect a