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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my one eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain behind a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Attacks typically start with abrupt, excruciating agony around one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical records suggest unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, 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. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other primary headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode eased.

National guidance on treatment advise that patients are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a