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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 group of students, when a sharp pain erupted behind my right eye. It was followed by quick stabs, like lightning bolts. As each class progressed, the pain eased and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term patient 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 a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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

Ancient medical records suggest unusual treatments for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading experts in treating the condition note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. 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 pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode passed.

Official guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But leading neurologists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional attacks are handled with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidance need updating to reflect a