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It was a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. Then came quick stabs, reminiscent of lightning bolts. As each class came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain behind one eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches typically start with abrupt, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the lack of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater education. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication delivered 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 people.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the approach.” Brief bouts with occasional attacks are managed with acute treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidelines need updating to reflect a