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It was a gloomy weekday in the morning in September 2016. I worked as a educator, trying to settle a new class, when a sudden pain erupted behind my one eye. It was followed by rapid stabs, similar to lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the train, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that lasts up to several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically start with abrupt, excruciating agony focused on 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 red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.

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Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his sufferers' heads.

Historical medical texts suggest bizarre treatments for what some experts would classify as a migraine. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk cures.

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

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four operations before finally being diagnosed in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her 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 misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor guided me through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of some individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that reduces nerve activity.

The national guidance need revising to reflect a