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It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp pain erupted behind my one eye. Then came quick shocks, similar to lightning bolts. As each class came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned frequently that fall, and once more in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with intense discomfort behind a single eye that lasts up to several hours.

About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating agony around one eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began 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 her youth. Alcohol in her teens, similar to many causes, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as drunken episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in treating the condition note this.

In the late 1990s, researchers released the findings of a research project for which they had induced attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked them through oxygen treatment and drugs until the attack passed.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are handled with acute treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a