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It was a dreary Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense sensation bloomed behind my right eye. This was followed by quick jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with severe discomfort behind a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the disorder, and males are more often affected. Cluster headaches usually begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant 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 comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical records propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Leading experts in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Short bouts with occasional episodes are handled with acute treatment alone. More prolonged or more intense periods require preventives such as certain drugs, sometimes paired 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 signals.

The official guidelines need updating to reflect a