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It began on a gloomy weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. This was followed by quick stabs, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense pain around one eye that lasts for several hours.

About one in 1,000 people suffer by the condition, and males are more frequently diagnosed. Attacks typically start with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by international headache 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 that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition 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 dental professionals misunderstood her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with acute therapy only. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need updating to reflect a