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It was a dreary Monday in the morning in September 2016. I was working as a teacher, trying to settle a new class, when a sharp pain sprang behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

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

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, excruciating pain focused on a single eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced suicidal thoughts amid bouts; the figure dropped to four percent when they were not in pain.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like many causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his victims' heads.

Historical healing texts suggest bizarre remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first 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”.

Cluster headaches were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key artery which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Short bouts with occasional attacks are managed with acute treatment only. Longer or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The official guidance need revising to reflect a