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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 intense sensation sprang behind my right eye. It was followed by quick stabs, like electric shocks. As each class progressed, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly cycle. September and October were the most severe, then February and March. I could predict the pattern: aura in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often start with severe discomfort around a single eye that lasts up to three hours.

About one in 1,000 people are affected by the disorder, and men are more often diagnosed. Attacks usually start with abrupt, severe agony around a single eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in periodic cycles; some patients have chronic attacks, defined by the lack of long symptom-free periods.

What connects patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure fell to four percent 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 hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan life around unpredictable pain took its effect. She particularly hated 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 worst episodes. “It robs you of the simple liberties we don't appreciate 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 documented throughout the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Ancient medical records suggest bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk remedies.

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

The disorder were only officially recognised by global headache committees in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for the majority 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 dentists misinterpreted her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen treatment and drugs until the episode passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of some people.

But consultant neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Brief cycles with infrequent episodes are handled with acute treatment only. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a