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It began on a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. It was followed by quick shocks, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally 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 clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts propose unusual remedies for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidance need updating to reflect a