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It was a overcast weekday morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation erupted behind my right eye. This was followed by rapid jolts, reminiscent of electric shocks. As each class came and went, the pain subsided and then came back with greater force. Four times that day I handed over a colleague with activities and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.

The attacks returned frequently that autumn, and once more in spring, soon forming an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort around one eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more frequently affected. Attacks usually start with abrupt, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the bus home.

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

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache occurring and disappearing each day at specific hours”.

Cluster headaches were only officially recognised by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major artery which supplies blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists released the results of a research project for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The length of the bout dictates the treatment.” Short cycles with infrequent episodes are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need revising to reflect a