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It began on a dreary weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came quick shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I left a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several triggers, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with therapies ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally recognised by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the disorder explain this.

In 1998, researchers released the results of a research project for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had four operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known individuals.

But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the approach.” Brief bouts with infrequent episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with steroids. 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 discomfort is that decreases nerve activity.

The national guidance need updating to reflect a