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It was a gloomy Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. Then came rapid stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort around a single eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks typically begin with sudden, severe agony focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found 64% of cluster patients experienced thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks 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 took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the inability to organize daily activities around unpredictable attacks 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 children during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value 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 throughout the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Ancient medical records propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the initial detailed 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”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Leading 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 results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes dentists still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a