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It was a gloomy Monday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with severe pain behind a single eye that lasts for three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe pain around a single eye that reaches its peak within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe 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 portable toilet.

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Headaches have been described across history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidance need updating to reflect a