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It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. This was followed by quick stabs, like lightning bolts. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with intense discomfort behind a single eye that persists up to several hours.

About one in 1,000 individuals are affected by the condition, and men are more often affected. Attacks typically start with abrupt, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

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

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

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

Still, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, scientists published the results 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 a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known people.

But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief cycles with occasional episodes are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a