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It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new class, when a intense sensation sprang behind my one eye. This was followed by quick jolts, like electric shocks. As the school day progressed, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-on pain 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 lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient 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 spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, 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 freedoms we don't appreciate until they're gone,” she says. She remembers obtaining 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 description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.

Historical medical records suggest unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the findings of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, identification remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a