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It was a overcast Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation erupted behind my right eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon forming an yearly pattern. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind one eye that lasts up to several hours.

About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with abrupt, severe pain around one eye that reaches its peak within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic bouts; others have chronic cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the failure to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family 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 obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records propose bizarre remedies for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

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 intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain 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 brain scanner. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's attacks 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 underwent multiple operations before eventually being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists argue the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive therapy only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a