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It began on a overcast weekday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden pain sprang behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As each class progressed, the pain subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and ran to the school bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists up to several hours.

Approximately one in 1,000 people suffer by the disorder, and men are more often diagnosed. Attacks usually begin with abrupt, severe pain around one eye that reaches its peak within minutes and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of long symptom-free periods.

What connects patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Still, the failure to organize life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

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Headaches have been documented throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.

Ancient medical records propose unusual treatments for what modern experts would classify as a migraine. In the medieval times, migraine was recognised as a separate condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally classified by global headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major artery which delivers blood to the head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, researchers published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such progress, diagnosis remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer guided me through oxygen therapy and drugs until the attack eased.

Official guidance on management advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.

But leading neurologists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle determines the treatment.” Brief cycles with occasional attacks are handled with acute therapy only. Longer or more intense bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a