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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort around one eye that lasts up to three hours.

About 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from 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 attack inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some individuals.

But consultant specialists believe the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a