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It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. Then came rapid shocks, like electric shocks. As each class progressed, the discomfort eased and then came back with increased force. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that fall, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in class by 9.30am. In 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headaches.

This condition often start with severe pain around one eye that persists up to several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating pain around a single eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Historical healing texts suggest unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.

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

The disorder were only officially classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode passed.

Official guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a