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It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. It was followed by rapid jolts, similar to lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe pain around one eye that lasts for three hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically start with abrupt, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to 4% when they were pain-free.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen therapy and medication until the episode eased.

Official guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant specialists argue the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidelines need updating to reflect a