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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my one eye. This was followed by quick shocks, like lightning bolts. As the school day came and went, the pain eased and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches returned frequently that autumn, and once more in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown pain in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe discomfort around one eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony focused on a single eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “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 childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She particularly hated 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 steals from you of the simple 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 described throughout history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre remedies for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more folk remedies.

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

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidance need revising to reflect a