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It began on a gloomy weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by rapid jolts, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early twinges on the train, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with intense pain around one eye that persists up to three hours.

About 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't appreciate 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 throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four operations before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief bouts with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidelines need updating to reflect a