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It was a dreary weekday morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a intense pain bloomed behind my one eye. Then came rapid jolts, like lightning bolts. As the school day progressed, the pain subsided and then came back with greater force. Four times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more often diagnosed. Cluster headaches typically start with abrupt, severe pain focused on a single eye that peaks within minutes and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “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. Alcohol in her adolescence, like many triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist hospital.

Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children 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 significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who afflicted his victims' heads.

Ancient healing records suggest bizarre remedies for what modern experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in diagnosing the condition explain this.

In 1998, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, 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 20s, she had her teeth pulled because dental professionals misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm advisor talked me through oxygen therapy and drugs until the episode eased.

Official guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve signals.

The official guidelines need updating to reflect a