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It was a dreary Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. Then came rapid jolts, similar to electric shocks. As each class came and went, the pain eased and then came back with greater intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically begin with severe discomfort around one eye that persists for three hours.

Approximately 1 in 1000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with sudden, excruciating agony around a single eye that reaches its peak within a short time and continues for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, similar to several causes, made things more intense. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to plan life 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 incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value 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 described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate condition, with treatments including bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally 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 artery that supplies blood to the head. Prominent specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a study for which they had induced cluster headaches in patients and observed the episodes in a brain scanner. The data, featured in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary 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 occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was she who responded. The author recalls calling a support line during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.

National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with occasional attacks are managed with acute therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The national guidance need revising to reflect a