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It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by rapid shocks, similar to electric shocks. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the morning, early pangs 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 headaches.

Cluster headaches typically begin with severe discomfort behind one eye that persists up to several hours.

About one in 1,000 people are affected by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the worst 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 facility.

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Headaches have been described across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the disease to an evil entity who attacked his victims' heads.

Ancient medical texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a major medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer 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 volunteer talked them through oxygen treatment and drugs until the attack passed.

Official guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the approach.” Brief bouts with infrequent episodes are handled with acute therapy only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a