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It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden sensation bloomed behind my right eye. Then came quick stabs, similar to lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took aspirin, but the pain remained unbearable.

The attacks appeared frequently that fall, and again in the 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 twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe discomfort behind one eye that lasts for several hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken behavior. Understanding finally came from her father 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 illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the ailment to an evil spirit who afflicted his victims' heads.

Historical healing texts propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a separate disorder, with treatments ranging from bloodletting to other, more superstitious cures.

It was a European physician who provided the first detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Leading experts in diagnosing the condition note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring advisor guided me through oxygen treatment and medication until the attack eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some individuals.

But consultant neurologists argue the guidance need revising to reflect a clearer treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidance need revising to reflect a