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It began on a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp sensation bloomed behind my one eye. This was followed by quick shocks, like lightning bolts. As the school day progressed, the pain eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with intense pain around a single eye that persists for several hours.

About 1 in 1000 people suffer by the disorder, and men are more often affected. Attacks typically begin with abrupt, excruciating agony around one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts during attacks; the number fell to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis 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 major concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with treatments ranging from bloodletting to other, more folk cures.

It was a European physician who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at fixed hours”.

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

In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a doctor researched his complaints.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.

Official guidance 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 choices include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.

The official guidelines need updating to reflect a