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It began on a gloomy weekday morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I left a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-blown agony in the classroom by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe pain around a single eye that lasts for three hours.

About 1 in 1000 people suffer by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic bouts; others have chronic attacks, defined by the absence of long pain-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable pain took its effect. She especially disliked 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 worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across the ages. “The earliest description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

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

It was a Dutch physician who provided the first detailed description 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”.

The disorder were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by eliminating other primary headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. 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 awareness. When another patient sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly 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 general practitioners avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Brief cycles with infrequent attacks are managed with abortive treatment only. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a