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It was a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp sensation bloomed behind my one eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often diagnosed. Attacks usually start with abrupt, 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 sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the intensity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer 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 condition worsened through her youth. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted 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 exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the brain. Leading experts in diagnosing the condition note this.

In 1998, scientists released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured 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 recovered.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the attack passed.

Official guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No oral painkillers or opioids should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a