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It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by rapid shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense discomfort behind a single eye that lasts for several hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Attacks usually start with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, like many causes, made things worse. After having sherry at her graduation party, she remembers barely being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern experts would classify as a migraine. In the medieval times, migraine was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Prominent experts in diagnosing the disorder note this.

In 1998, researchers published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an bout in 2021; a reassuring advisor guided me through oxygen therapy and drugs until the attack passed.

National guidelines on management recommend that patients are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a