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It was a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden pain bloomed behind my one eye. This was followed by quick stabs, like electric shocks. As each class progressed, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense discomfort around one eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches usually start with abrupt, severe agony around one eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster patients reported suicidal thoughts amid attacks; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to plan 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 looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient medical records suggest bizarre remedies for what modern observers would describe as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity 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, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But leading specialists believe the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief bouts with occasional attacks are handled with abortive therapy only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a