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It was a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp sensation sprang behind my one eye. This was followed by rapid stabs, like electric shocks. As the school day progressed, the pain eased 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 took aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches often begin with severe pain around one eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually start with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, Rod. “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, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the inability to plan daily activities around erratic attacks took its effect. She particularly hated being unable to plan social events, 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 robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records propose bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies including herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at specific hours”.

The disorder were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Leading experts in treating the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. 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 pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some people.

But consultant specialists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout dictates the treatment.” Short cycles with occasional attacks are managed with acute treatment only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a