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It began on a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. Then came quick shocks, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe discomfort around one eye that persists for three hours.

About one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically start with sudden, excruciating agony around one eye that reaches its peak within a short time and continues 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 an episodic type, which arrives in periodic cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found 64% of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, 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 liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing records suggest bizarre remedies for what modern experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The results, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction 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 blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches 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 extracted because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and drugs until the episode eased.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently helps manage the bouts of some individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout determines the treatment.” Short bouts with occasional attacks are managed with acute therapy only. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a