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It began on a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. It was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that persists for three hours.

About one in 1,000 people suffer by the disorder, and males are more often affected. Attacks typically begin with sudden, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding 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 episodes. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan life around unpredictable pain took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient healing records suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in treating the condition explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent episodes are managed with acute treatment only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a