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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sharp sensation erupted behind my right eye. Then came quick jolts, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain around one eye that lasts for three hours.

Approximately one in 1,000 people are affected by the disorder, and males are more often affected. Cluster headaches usually start with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, defined by the absence of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks began 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 condition deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things worse. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

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

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Headaches have been described throughout the ages. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records suggest unusual treatments for what modern observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified 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 artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with acute therapy alone. 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 injection into the area of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a