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It was a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid jolts, similar to lightning bolts. As the school day came and went, the pain subsided and then came back with increased force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort behind one eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more often diagnosed. Cluster headaches usually begin with abrupt, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the lack of long pain-free periods.

What unites patients is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the figure fell to 4% when they were not in pain.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Nevertheless, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the disease to an evil entity who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what some observers would describe as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists published the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, featured in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how long? What season? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode 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 a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and medication until the episode passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Short bouts with occasional attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. Many 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 official guidelines need revising to reflect a