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It was a dreary Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation sprang behind my one eye. It was followed by rapid jolts, similar to electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the 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 commute, full-blown pain in the classroom by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically begin with severe pain around a single eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks typically start with abrupt, excruciating agony focused on one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the absence of long symptom-free periods.

What connects patients is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

The disorder were only formally classified by international medical societies in the late 1980s. 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 diagnosing the disorder explain this.

In 1998, scientists published the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer guided me through oxygen therapy and medication until the attack passed.

Official guidance on management recommend that patients are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Short bouts with infrequent episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a