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It began on a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and again in spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and men are more frequently affected. Attacks typically start with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in periodic cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several triggers, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies including herbal concoctions to other, more folk cures.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the late 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 note this.

In the late 1990s, researchers published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with abortive treatment only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a