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It began on a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain sprang behind my right eye. It was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with intense discomfort around a single eye that persists up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What unites sufferers is the intensity. One research paper 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 number dropped to four percent when they were pain-free.

Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like many causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its effect. 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 children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The data, 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 pain, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more 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 early 2021; a calm advisor guided them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But consultant specialists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with infrequent attacks are managed with acute treatment alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that decreases nerve activity.

The national guidance need updating to reflect a