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It was a gloomy Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind a single eye that persists for several hours.

About 1 in 1000 people are affected by the condition, and males are more frequently affected. Attacks usually start with sudden, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began 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 worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in 2002 at a national neurology center.

Still, the failure to organize daily activities around erratic pain took its toll. She especially 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 appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Ancient medical records suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from bloodletting 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 speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with occasional attacks are handled with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a