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It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation sprang behind my right eye. Then came rapid stabs, similar to electric shocks. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The attacks returned frequently that autumn, and again in the spring, soon establishing an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around one eye that lasts up to several hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Attacks typically begin with abrupt, severe agony around one eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; others have continuous attacks, characterized by the lack of long pain-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan life around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

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Headaches have been described across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Ancient medical records propose bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that supplies blood to the head. Prominent experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major medical publication, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do signs 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 verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

Dorothy Chapman, 78, has experienced the condition for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.

National guidance on treatment advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout dictates the approach.” Short cycles with infrequent attacks are managed with abortive therapy only. More prolonged or more intense periods require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.

The official guidance need revising to reflect a