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It was a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my one eye. Then came rapid stabs, similar to electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Multiple 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 pain remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon forming an annual cycle. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-on agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically begin with severe discomfort around one eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. 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 childhood. Alcohol in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its toll. She particularly 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 worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient healing texts propose unusual remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent 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 recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the episode eased.

Official guidance on management recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are managed with acute therapy alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a