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It was a gloomy weekday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain behind a single eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically start with sudden, excruciating agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like many triggers, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.

Ancient medical texts propose unusual remedies for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The data, featured in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with abortive treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a