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It began on a dreary weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, like lightning bolts. As each class progressed, the discomfort subsided and then returned with increased intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks appeared frequently that fall, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in class by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort behind one eye that persists for three hours.

About 1 in 1000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically start with abrupt, severe agony focused on a single eye that reaches its peak within minutes and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the absence of extended pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst 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 facility.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical texts suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major artery that supplies blood to the brain. Leading experts in treating the condition explain this.

In 1998, 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 results, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced 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 extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided me through oxygen treatment and drugs until the attack eased.

National guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidelines need revising to reflect a