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It was a overcast weekday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my right eye. Then came rapid jolts, like lightning bolts. As each class came and went, the pain subsided and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort around a single eye that persists for several hours.

About one in 1,000 people are affected by the condition, and males are more often affected. Cluster headaches usually start with sudden, severe 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 multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which occurs in periodic cycles; others have continuous attacks, characterized by the absence of long symptom-free periods.

What unites patients is the intensity. One study scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the figure dropped to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several causes, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, 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 definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to plan daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties 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 facility.

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Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more folk remedies.

It was a Dutch doctor who provided the initial detailed account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by global medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the condition explain this.

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

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition 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 extracted because dental professionals misunderstood her pain. She believes the dental profession still need greater education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of well-known individuals.

But consultant neurologists believe the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve activity.

The official guidance need updating to reflect a