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It was a gloomy weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense sensation sprang behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that lasts for several hours.

About one in 1,000 people suffer by the disorder, and men are more frequently diagnosed. Attacks usually start with sudden, severe pain around a single eye that peaks within a short time and continues 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 sweating. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the failure to organize daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers released the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, 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 advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced 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 twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief cycles with occasional episodes are handled with abortive treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a