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It was a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by quick shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically begin with intense pain behind one eye that persists for several hours.

About one in 1,000 individuals are affected by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites sufferers is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.

Still, the inability to plan life around unpredictable attacks 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 steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what modern experts would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the initial detailed 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 fixed hours”.

The disorder were only officially recognised by international medical societies 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 delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published 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 journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidelines need revising to reflect a