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It was a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. This was followed by rapid stabs, like electric shocks. As each class came and went, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort around one eye that persists up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating agony around a single eye that reaches its peak 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 red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to plan life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient medical records propose unusual remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the condition note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent attacks are handled with acute therapy alone. Longer or more severe periods require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need updating to reflect a