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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a intense pain erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain around one eye that lasts for several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started 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 symptoms deteriorated through childhood. Alcohol in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. One man's symptoms started in 1986 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 diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a