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It began on a gloomy weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain erupted behind my right eye. It was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches appeared frequently that autumn, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense pain around a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Wales, isn't surprised. Her episodes started 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 symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a specialist hospital.

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 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 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 described throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent entity who attacked his sufferers' heads.

Historical medical records propose bizarre remedies for what some experts would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally classified by international headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists published the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and medication until the episode eased.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are managed with acute treatment only. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a