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It began on a overcast weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden pain erupted behind my right eye. This was followed by rapid jolts, like lightning bolts. As each class came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in class by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that lasts up to several hours.

Approximately one in 1,000 people suffer by the condition, and males are more often diagnosed. Attacks usually begin with abrupt, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic cycles; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure fell to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around erratic attacks took its effect. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from 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 episode inside a facility.

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Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre treatments for what modern observers would classify as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the first detailed description 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 specific hours”.

The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, scientists released the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as migraine, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided me through oxygen therapy and medication until the episode passed.

National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of well-known individuals.

But consultant specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a