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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sudden pain bloomed behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort subsided 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 took paracetamol, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, 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 robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk remedies.

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

The disorder were only officially classified by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity 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 progress, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a