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It was a dreary weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. Then came quick shocks, reminiscent of electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I left a colleague with activities and hurried to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in class by 9.30am. In 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that persists up to several hours.

About one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, 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 steals from 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 episode inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Leading specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute therapy alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a