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It was 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 right eye. Then came quick stabs, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition often begin with intense discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Attacks typically begin with abrupt, severe agony around one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Short bouts with infrequent episodes are managed with abortive treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need revising to reflect a