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It was a dreary weekday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. This was followed by quick shocks, like lightning bolts. As each class came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that autumn, and again in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often start with severe discomfort around a single eye that lasts for several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently affected. Attacks usually begin with sudden, excruciating agony around one eye that reaches its peak within a short time and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable 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 looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout 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 evil entity who attacked his victims' heads.

Ancient medical records propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, 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 felt better.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor researched his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that sufferers are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The national guidance need revising to reflect a