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It was a gloomy Monday morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my one eye. It was followed by quick shocks, like lightning bolts. As each class came and went, the pain subsided and then returned with greater force. Multiple times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned frequently that autumn, and once more in spring, soon establishing an yearly cycle. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind a single eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the disorder, and men are more frequently affected. Cluster headaches typically begin with sudden, severe agony around a single eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal bouts; others have chronic attacks, defined by the absence of long symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster headache patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, 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 a difficult child,” she says. Her symptoms worsened through her youth. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated behavior. 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 clerical work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.

Nevertheless, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

Cluster headaches were only officially recognised 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 artery which supplies blood to the head. Leading experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple operations before finally being correctly identified in recently, after a physician looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to specialist clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from cluster headaches for most 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 misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.

Official guidelines 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. Preventive choices include verapamil, which apparently helps manage the attacks of well-known people.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts 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 injection into the side of the head where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a