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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began 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 worsened through her youth. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

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

The disorder were only formally classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Leading specialists in treating the condition note this.

In 1998, researchers released the findings of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four operations before eventually being correctly identified in recently, after a physician looked up his complaints.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidance on management advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of well-known people.

But consultant specialists 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 everything: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidance need revising to reflect a