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It began on a dreary weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden sensation sprang behind my right eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared repeatedly that autumn, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe pain around one eye that lasts up to three hours.

About 1 in 1000 people are affected by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor 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 many causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally 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 relocating, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't appreciate 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 documented throughout history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.

Historical medical records propose bizarre treatments for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in treating the condition note this.

In 1998, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She believes the dental profession still need much more education. When another patient 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 guided them through oxygen treatment and drugs until the episode eased.

Official guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some people.

But consultant specialists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional attacks are managed 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 procedure into the side of the head where the discomfort is that reduces nerve activity.

The official guidelines need updating to reflect a