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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 sudden sensation bloomed behind my one eye. Then came quick stabs, like electric shocks. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that persists for three hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, severe agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients reported suicidal thoughts amid bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.

Ancient healing records propose unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a