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It began on a dreary Monday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid shocks, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort around one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, 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 small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

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

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Short cycles with infrequent episodes are handled with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a