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It was a overcast weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain erupted behind my right eye. Then came quick jolts, like lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I took ibuprofen, but the pain remained unbearable.

The headaches returned repeatedly that autumn, and once more in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-on pain in class by 9.30am. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with intense pain behind one eye that lasts for three hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Attacks typically start with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated behavior. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the worst 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 significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the disease to an evil entity who attacked his victims' heads.

Ancient healing records suggest unusual treatments for what modern experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key artery which supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the findings of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains slow. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a helpline during an bout in early 2021; a reassuring volunteer guided them through oxygen treatment and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of some individuals.

But leading neurologists believe the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are handled with abortive treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a