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It began on a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain sprang behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with severe discomfort around one eye that lasts up to three hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more often affected. Cluster headaches usually start with abrupt, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her episodes as drunken behavior. 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 took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms 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 portable toilet.

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Headaches have been described throughout the ages. “The earliest description of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Ancient medical records suggest bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in diagnosing the condition note this.

In 1998, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a physician researched his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. 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 me through oxygen therapy and drugs until the episode passed.

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

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional attacks are handled with abortive therapy alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. 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 discomfort is that decreases nerve activity.

The official guidance need updating to reflect a