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It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe discomfort behind one eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and men are more often affected. Attacks usually begin with abrupt, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of extended pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many triggers, made things worse. After drinking 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 finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties 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 documented across history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts suggest bizarre remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

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

The disorder were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in diagnosing 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 observed the episodes in a brain scanner. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm advisor talked me through oxygen treatment and medication until the episode passed.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some people.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief cycles with occasional episodes are managed with acute treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a