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It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation sprang behind my right eye. This was followed by quick stabs, similar to electric shocks. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned repeatedly that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches typically begin with intense discomfort around one eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe pain around a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What connects patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was two. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, similar to many causes, made things more intense. After drinking alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding eventually came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European physician who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.

The disorder were only officially recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

In spite of such advances, identification remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being correctly identified in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific features such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode passed.

Official guidelines on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some individuals.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. 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 signals.

The official guidance need updating to reflect a