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It was a gloomy weekday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my one eye. It was followed by quick shocks, like electric shocks. As each class came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often start with intense pain around one eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and men are more frequently diagnosed. Cluster headaches typically begin with sudden, severe pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or other conditions. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support finally came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the inability to organize life around erratic attacks took its toll. She especially 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 paralysis caused by the worst episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical texts suggest bizarre remedies for what some experts would classify as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only formally classified by global medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In the late 1990s, scientists published the results of a study for which they had triggered attacks 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 in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. 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 has been free from an attack since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.

National guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the attacks of well-known people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the bout dictates the approach.” Brief bouts with infrequent attacks are handled with acute therapy alone. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidelines need revising to reflect a