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It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation sprang behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe pain around a single eye that persists up to several hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks typically start with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, 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 appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the guidance need revising to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.

The national guidelines need updating to reflect a