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It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain bloomed behind my right eye. Then came quick stabs, like electric shocks. As each class came and went, the discomfort eased and then came back with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The attacks appeared frequently that fall, and again in spring, soon forming an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists for several hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Ancient healing records propose unusual remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only formally classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misunderstood her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a