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It began on a overcast Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that fall, and again in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain behind one eye that persists for three hours.

About one in 1,000 individuals suffer by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony focused on one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. 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 took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms 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 facility.

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Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing records propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and monitored 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 deactivation when they felt better.

Despite such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and medication until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout dictates the approach.” Brief bouts with occasional episodes are handled with acute treatment alone. Longer or more severe 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 skull where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a