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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick shocks, like electric shocks. As each class came and went, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and males are more frequently diagnosed. Attacks usually begin with sudden, severe pain around one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties 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 the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Historical medical records propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor looked up his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from 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 dental professionals misinterpreted her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the attacks of well-known individuals.

But consultant specialists argue the guidance need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a