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It was a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain erupted behind my right eye. This was followed by quick jolts, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that autumn, and once more in the spring, soon forming an annual pattern. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by mid-morning. In 2019, a GP eventually referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind a single eye that persists for several hours.

About one in 1,000 people are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which occurs in seasonal bouts; others have chronic attacks, characterized by the lack of long pain-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to plan life around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Historical medical records propose unusual remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk remedies.

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

Cluster headaches were only formally classified by global headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists published the findings of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor guided me through oxygen therapy and drugs until the episode passed.

Official guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.

But consultant neurologists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with occasional attacks are managed with acute treatment only. More prolonged or more intense periods 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 injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need revising to reflect a