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It began on a overcast Monday morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid jolts, like electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I handed over a colleague 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 returned repeatedly that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, 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 start with severe discomfort around a single eye that persists up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks usually begin with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her father 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 concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

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

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “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 confirming the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor talked me through oxygen therapy and drugs until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a