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It was a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks typically begin with abrupt, severe pain focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky 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 diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical healing records suggest unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Prominent specialists in treating the condition explain this.

In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are managed with abortive therapy alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a