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It began on a dreary Monday morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. It was followed by rapid shocks, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.

This condition typically begin with severe pain around one eye that lasts for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Attacks usually start with abrupt, severe agony focused on one eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to organize life around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient medical texts suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was identified as a distinct disorder, with therapies including bloodletting to other, more folk cures.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the brain. Prominent experts in treating the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a support line during an bout in 2021; a calm volunteer talked me through oxygen treatment and medication until the episode passed.

National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short cycles with infrequent attacks are managed with abortive treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a