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It began on a gloomy weekday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation sprang behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in the classroom 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 typically start with severe discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks usually start with abrupt, excruciating pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally classified by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode passed.

National guidance on management advise that patients are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of well-known people.

But leading specialists argue the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short bouts with infrequent attacks are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a