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It was a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation sprang behind my one eye. This was followed by quick jolts, like 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 douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with severe discomfort around one eye that persists up to three hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, excruciating pain focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster patients reported thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its toll. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient medical records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at fixed hours”.

Cluster headaches were only formally classified by global headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder note this.

In 1998, scientists released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge 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 the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen treatment and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant specialists argue the guidance need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are managed with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a