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It began on a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by quick stabs, like lightning bolts. As the school day progressed, the discomfort subsided and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with severe discomfort around a single eye that persists for three hours.

About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically start with sudden, severe pain around a single eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical healing texts propose unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder explain this.

In 1998, scientists published the findings of a study for which they had induced attacks in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition 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 molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.

National guidelines on treatment advise that sufferers are offered high-dose oxygen therapy 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 apparently soothes the attacks of some individuals.

But leading specialists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short bouts with infrequent attacks are handled with acute treatment only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a