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It began on a overcast weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense pain erupted behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with intense pain around a single eye that lasts for several hours.

Approximately one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating agony around one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the absence of long pain-free periods.

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

Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. 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 found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.

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 paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who afflicted his victims' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable 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 twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Brief bouts with infrequent episodes are managed with acute treatment alone. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a