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It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically start with severe pain behind a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more often affected. Cluster headaches usually start with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; some patients have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “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 disease to an malevolent spirit who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, 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 specialist centers. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and medication until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidance need revising to reflect a