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It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased force. Multiple times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared repeatedly that autumn, and again in spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-blown pain in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

About 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony around one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What unites patients is the intensity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or other conditions. Another found 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes began 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 condition worsened through her youth. Alcohol in her adolescence, 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 relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national hospital.

Nevertheless, the inability to plan daily activities around erratic pain 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 cared for by her family during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't value 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 described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient medical records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at fixed hours”.

The disorder were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or opioids should be used. Preventive options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But leading specialists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with abortive treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidance need revising to reflect a