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It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my right eye. This was followed by quick stabs, similar to electric shocks. As each class progressed, the discomfort eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in the 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 twinges on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional 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 attacks. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining 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 first description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical medical texts suggest unusual remedies for what some experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally recognised by global headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Prominent specialists in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with abortive therapy alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a