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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain bloomed behind my right eye. It was followed by quick stabs, like lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with severe discomfort behind one eye that persists for three hours.

Approximately 1 in 1000 individuals are affected by the disorder, and males are more frequently affected. Attacks usually begin with sudden, severe pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like several causes, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Still, the failure to plan daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky 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 freedoms we don't appreciate 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 earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such advances, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, 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 precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a