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It began on a overcast Monday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick stabs, reminiscent of lightning bolts. As the school day came and went, the pain eased and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches 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 anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind a single eye that lasts for three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, severe agony around one eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

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

Still, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an malevolent entity who attacked his victims' heads.

Ancient healing records suggest unusual remedies for what modern experts would classify as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go 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 recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen treatment and medication until the attack passed.

National guidelines on treatment advise that patients are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known people.

But leading specialists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a