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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sharp pain erupted behind my right eye. Then came rapid shocks, like electric shocks. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on agony in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with severe discomfort behind a single eye that lasts for several hours.

About one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks usually start with sudden, excruciating agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started 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 her youth. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic attacks took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient healing records suggest unusual remedies for what modern experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent 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 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 one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say delays 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 eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a