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It was a gloomy Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Attacks usually begin with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of long symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “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. Alcohol in her adolescence, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding 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 relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She particularly 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 paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the disease to an malevolent entity who attacked his victims' heads.

Ancient medical texts propose unusual treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified 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 major blood vessel that delivers blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, 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 pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm volunteer talked them through oxygen treatment and medication until the episode passed.

National guidelines on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The length of the bout determines the approach.” Brief bouts with infrequent attacks are handled with acute treatment alone. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a