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It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden pain bloomed behind my one eye. Then came quick jolts, similar to electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Four times that day I left a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in the classroom by 9.30am. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense pain around a single eye that lasts for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually begin with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as 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. I have the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the lack of extended pain-free periods.

What connects sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan social events, 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 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 across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the subject. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a European physician who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in treating the condition note this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The data, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant specialists believe the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Short cycles with occasional attacks are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need revising to reflect a