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It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain around a single eye that persists up to several hours.

About 1 in 1000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually start with sudden, severe agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have chronic cluster headaches, defined by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around erratic pain took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Ancient medical texts suggest bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially recognised by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. 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 discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a