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It was a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unrelenting.

The attacks appeared repeatedly that fall, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain behind a single eye that persists for several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives 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 hid her illness. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious 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 intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent episodes are handled with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a