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It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often begin with intense pain around one eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating pain around 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 associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; others have continuous attacks, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “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 dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst 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 episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that delivers blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, featured in a major journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer guided me through oxygen treatment and medication until the attack eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of some people.

But leading specialists argue 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 cycle determines the treatment.” Brief bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidance need revising to reflect a