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It began on a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my right eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then returned with greater intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with severe pain around one eye that lasts for several hours.

Approximately 1 in 1000 people suffer by the condition, and males are more often affected. Cluster headaches typically begin with sudden, severe agony focused on a single eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like many triggers, 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 episodes as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly 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 erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his victims' heads.

Historical medical texts propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.

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

In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.

Official guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of some people.

But leading specialists believe the guidance need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are managed with acute treatment alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.

The official guidelines need revising to reflect a