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It was a overcast weekday in the morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. Then came quick jolts, like electric shocks. As the school day came and went, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort behind one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often affected. Attacks usually begin with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in seasonal bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small liberties we don't value 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 across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual treatments for what some experts would describe as a migraine. In the middle ages, migraine was recognised as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

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

The disorder 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. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. 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 deactivation when they felt better.

In spite of such advances, identification remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack passed.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that decreases nerve signals.

The official guidance need updating to reflect a