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It began on a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain erupted behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in class by mid-morning. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. 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 took office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the inability to plan life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the first detailed account of a cluster headache. 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 mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known people.

But consultant specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a