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It was a gloomy Monday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain erupted behind my right eye. This was followed by rapid shocks, like electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.

The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a GP eventually referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with severe pain around a single eye that persists up to several hours.

About 1 in 1000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain focused on a single eye that peaks within minutes 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 facial sweating. There exists an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm during attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her relatives often mistook her attacks as drunken behavior. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.

Historical medical records propose unusual remedies for what some experts would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally recognised by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the brain. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such progress, identification remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. 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 the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack passed.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with abortive therapy alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a