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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then came back with greater 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 tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in class by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Ancient healing records propose unusual remedies for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. 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 late 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers 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, published in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a