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It was a overcast weekday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my right eye. It was followed by quick jolts, like electric shocks. As each class progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took aspirin, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with severe pain around a single eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what modern observers would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity 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 delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But many first go to A&E or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood 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. The author recalls calling a support line during an bout in early 2021; a reassuring advisor guided 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 specific drug 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 individuals.

But consultant specialists argue the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Short bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need updating to reflect a