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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day came and went, the pain eased and then came back with increased intensity. Four times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks 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 anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain around one eye that lasts for several hours.

Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with sudden, excruciating agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number dropped to 4% when they were not in pain.

One patient, in her seventies, a long-term patient from Wales, finds this understandable. 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 childhood. Alcohol in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated episodes. Support finally 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 office work after moving, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from you of the small 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 described throughout history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an malevolent entity who afflicted his sufferers' heads.

Ancient healing texts propose unusual treatments for what some observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with treatments including herbal concoctions to other, more superstitious 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 “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition explain this.

In 1998, researchers released the results of a research project for which they had induced attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains slow. One man's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being correctly identified in recently, after a physician researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the bouts of well-known individuals.

But consultant neurologists argue the guidance need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are managed with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a