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It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense pain sprang behind my right eye. Then came quick stabs, like electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in class by 9.30am. In late 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around one eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

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

Cluster headaches were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed history is essential: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced the condition 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 molars extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a