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It was a gloomy weekday morning in September 2016. I was working as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. This was followed by rapid jolts, like lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.

The attacks returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with intense pain around one eye that persists for several hours.

About one in 1,000 individuals suffer by the condition, and males are more often affected. Cluster headaches typically start with abrupt, excruciating agony focused on 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 tearing eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the severity. One study rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a chronic patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the failure to organize life around erratic attacks took its toll. 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 children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

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Headaches have been documented across 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 attributed the ailment to an malevolent spirit who afflicted his victims' heads.

Ancient healing texts suggest bizarre remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

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

Specialists say wait times in diagnosis and treatment occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given inadequate therapies.

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 molars pulled because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the attack eased.

National guidelines on management recommend that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are managed with acute treatment only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a