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It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by rapid jolts, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe discomfort behind one eye that lasts for three hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. A separate discovered 64% of cluster patients reported suicidal thoughts during bouts; 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 a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan daily activities around erratic pain took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who attacked his victims' heads.

Historical medical texts suggest unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in treating the disorder note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four surgeries before finally being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary head pain conditions, such as migraine, before diagnosing the disorder. 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 redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a