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It was a overcast Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came quick stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with increased force. Multiple times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the agony remained unbearable.

The headaches returned repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; others have chronic attacks, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another found a significant percentage of cluster patients experienced suicidal thoughts amid bouts; the figure fell to 4% when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist hospital.

Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what modern experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the brain. Leading specialists in treating the disorder explain this.

In the late 1990s, researchers published the results of a study for which they had induced attacks in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring volunteer talked them through oxygen treatment and medication until the attack passed.

Official guidance on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute treatment only. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a