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It began on a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden sensation sprang behind my one eye. Then came quick stabs, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

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

Cluster headaches often start with severe discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Attacks typically begin with abrupt, severe pain around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began 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 worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published 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, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Brief cycles with occasional episodes are managed with acute therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a