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It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, 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 soak my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically begin with intense pain around one eye that lasts up to three hours.

About 1 in 1000 people suffer by the disorder, and males are more frequently diagnosed. Cluster headaches typically start with sudden, severe pain around a single eye that reaches its peak within a short time and continues for up to three hours. Episodes occur in cycles, every day 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 cluster headaches, characterized by the absence of long symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm during attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, like several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in 2002 at a specialist neurology center.

Still, the inability to plan life around unpredictable attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the worst 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 facility.

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Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his sufferers' heads.

Ancient medical texts propose unusual treatments for what some observers would classify as a migraine. In the middle ages, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk cures.

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

Cluster headaches were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the head. Prominent specialists in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The results, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

In spite of such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But many first go to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her symptoms. She thinks the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm volunteer guided them through oxygen therapy and medication until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the treatment.” Short cycles with infrequent episodes are handled with abortive treatment only. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The official guidelines need revising to reflect a