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It was a dreary Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick shocks, like lightning bolts. As the school day progressed, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort around one eye that persists for several hours.

About 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, severe pain around a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, finds this understandable. 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 condition deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms 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 portable toilet.

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Headaches have been described throughout history. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical medical records propose unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

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

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists released the findings of a research project for which they had induced cluster headaches 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 circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more education. When another patient 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 reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with abortive treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a