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It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation bloomed behind my one eye. It was followed by quick jolts, similar to electric shocks. As the school day came and went, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with intense discomfort around one eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony around one eye that peaks within a short time and lasts 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 perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was dismissed 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 plan life around unpredictable pain took its effect. She especially disliked 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 most severe episodes. “It robs you of the small liberties we don't value 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 earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who attacked his victims' heads.

Historical medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only formally recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key artery that supplies blood to the head. Leading specialists in treating the disorder note this.

In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm advisor guided them through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the attacks of some people.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are handled with abortive treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a