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It began on a overcast weekday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sharp sensation erupted behind my right eye. Then came quick jolts, like lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an annual pattern. September and October were the worst, then the late winter. I could predict the routine: aura in the morning, early pangs on the commute, full-blown agony in class by 9.30am. In late 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that lasts for three hours.

About one in 1,000 people suffer by the disorder, and men are more often affected. Cluster headaches usually start with sudden, severe agony around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were pain-free.

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

Her relatives often mistook her episodes as intoxicated episodes. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to organize life around unpredictable pain took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for 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 recalls obtaining tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been documented throughout the ages. “The first description of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient healing texts propose unusual remedies for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally classified by international headache committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in diagnosing the disorder note this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such advances, identification remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to dedicated clinics. But many first go to emergency rooms 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 recent years. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked them through oxygen treatment and medication until the episode passed.

Official guidelines on management advise that sufferers are offered high-flow oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with acute treatment alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a