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It was a gloomy weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation erupted behind my right eye. Then came rapid shocks, like lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe pain behind a single eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “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 her youth. Drinking in her teens, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially disliked 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 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 winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

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

The disorder were only officially recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode passed.

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

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a