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It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a intense sensation bloomed behind my one eye. It was followed by rapid shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the train, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with intense discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic cycles; some patients have continuous attacks, defined by the absence of extended pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Alcohol in her adolescence, similar to several causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the inability to organize life around unpredictable attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache 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 condition explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

National guidance on treatment recommend that patients are offered high-flow oxygen and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short bouts with occasional episodes are managed with acute therapy only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the head where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a