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It was a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks 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 symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, 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 liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. 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 advisor guided them through oxygen therapy and drugs until the attack passed.

Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout determines the approach.” Short cycles with occasional attacks are managed with acute therapy only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.

The national guidance need updating to reflect a