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It was a overcast Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. Then came quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort 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 soak my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with intense pain around one eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic cluster headaches, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.

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

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical healing records propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, identification remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars 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. I remember calling a helpline during an bout in 2021; a calm advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need revising to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment only. 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 bout – an injection into the side of the skull where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a