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It was a dreary weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by quick stabs, like electric shocks. As each class progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom 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 start with severe discomfort behind a single eye that lasts up to three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently diagnosed. Attacks typically begin with sudden, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

Nevertheless, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch 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 disappearing each day at fixed hours”.

Cluster headaches were only officially recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the brain. Prominent specialists in treating the condition note this.

In 1998, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

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

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the episode eased.

National guidance on management advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with occasional episodes are managed with acute treatment alone. Longer or more severe bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a