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It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation sprang behind my right eye. It was followed by rapid shocks, similar to electric shocks. As the school day progressed, the discomfort eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and again in spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain behind a single eye that lasts for three hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

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

Val Hobbs, 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 spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

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

Still, the inability to organize life around unpredictable attacks 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 children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value 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 throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who attacked his victims' heads.

Historical healing records propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common headache disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific features such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked me through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a