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It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain erupted behind my right eye. Then came quick jolts, like electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the commute, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with severe discomfort behind one eye that lasts for three hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often affected. Attacks typically start with sudden, severe agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients experienced suicidal thoughts during attacks; the number dropped to four percent when they were pain-free.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Understanding eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national neurology center.

Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient medical texts suggest unusual treatments for what modern observers would describe as a headache disorder. In the middle ages, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially recognised by global headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Leading specialists in treating the condition explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, 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, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.

Specialists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common head pain disorders, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most 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 dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer guided them through oxygen treatment and drugs until the episode eased.

National guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But consultant specialists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with abortive treatment only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of 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 guidance need revising to reflect a