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It was a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. Then came rapid stabs, reminiscent of electric shocks. As each class progressed, the discomfort eased and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically begin with intense discomfort around a single eye that persists up to several hours.

About one in 1,000 individuals are affected by the disorder, and men are more often affected. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose unusual remedies for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the bouts of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need revising to reflect a