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It was a dreary Monday in the morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation sprang behind my one eye. Then came rapid jolts, reminiscent of electric shocks. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort around one eye that lasts up to several hours.

About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with sudden, excruciating agony around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as drunken behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

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Headaches have been documented throughout the ages. “The earliest description of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical healing records propose unusual remedies for what some experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk cures.

It was a European doctor who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only formally classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in treating the disorder note this.

In the late 1990s, researchers released the results of a study 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 increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to specialist centers. But many first go to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches 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 teeth extracted because dentists misinterpreted her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and medication until the episode passed.

National guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes paired 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 pain is that reduces nerve activity.

The national guidelines need revising to reflect a