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It was a dreary weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense pain sprang behind my right eye. Then came quick shocks, similar to 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 activities and ran to the school bathroom to douse my face with cold water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown agony in class by mid-morning. In late 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

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

About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually begin with sudden, severe pain around one eye that peaks within minutes and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. 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 most severe episodes. “It robs you of the small 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 facility.

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Headaches have been described throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Ancient healing texts propose unusual treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk cures.

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

The disorder were only formally recognised by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which delivers blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen and/or a anti-migraine drug administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But leading neurologists argue the guidance need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the approach.” Short cycles with infrequent episodes are handled with abortive therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the pain is that reduces nerve activity.

The official guidance need revising to reflect a