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It was a overcast weekday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick jolts, like lightning bolts. As the school day progressed, the pain eased and then returned with greater intensity. Four times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual cycle. The autumn months were the worst, then February and March. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense discomfort around one eye that lasts for several hours.

Approximately 1 in 1000 people are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What unites sufferers is the severity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm during attacks; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic patient from Wales, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to plan life around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small liberties 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 facility.

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Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.

Historical medical texts suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the mid-20th century 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 treating the condition explain this.

In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.

A charity trustee, 78, 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 20s, she had her teeth extracted because dental professionals misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with abortive therapy alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the head where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a