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It was a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. Then came rapid jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often start with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 people suffer by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, severe pain around one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began 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 condition deteriorated through childhood. Drinking in her adolescence, like several causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken behavior. Understanding eventually came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.

Still, the inability to plan daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Ancient medical records suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.

It was a European physician who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

The disorder were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists released the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such advances, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short bouts with occasional episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need revising to reflect a