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It was a gloomy Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in class by mid-morning. In 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort behind one eye that lasts for several hours.

Approximately one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Attacks usually begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks come in clusters, daily or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the failure to organize life around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing texts suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening 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 thought to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading specialists in diagnosing the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.

But consultant neurologists argue the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidance need updating to reflect a