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It began on a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly 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 routine: aura in the shower, early twinges on the train, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort behind one eye that lasts for several hours.

About 1 in 1000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the inability to organize life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate 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 across the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a Dutch doctor 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 disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Leading specialists in treating the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a