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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my one eye. This was followed by rapid shocks, like electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: 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 sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts for three hours.

About 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically start with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One research paper rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks began 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 deteriorated through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

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

Nevertheless, the failure to plan life around erratic attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate 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 throughout history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur 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 headache conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, 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 decreases nerve activity.

The official guidance need updating to reflect a