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It began on a gloomy 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 intense pain sprang behind my one eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with intense discomfort behind a single eye that lasts for several hours.

Approximately one in 1,000 individuals are affected by the condition, and men are more often affected. Cluster headaches typically start with sudden, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients experienced thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. 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 clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during episodes. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records propose bizarre treatments for what some experts would classify as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious cures.

It was a Dutch physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.

The disorder were only officially recognised by global medical societies in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in treating the condition note this.

In the late 1990s, scientists published the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. Jamie Charteris's attacks 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 surgeries before eventually being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include verapamil, which reportedly helps manage the attacks of some individuals.

But leading neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a