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It was a gloomy weekday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. It was followed by quick shocks, similar to lightning bolts. As each class progressed, the discomfort subsided and then came back with increased intensity. 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 aspirin, but the pain remained unbearable.

The attacks appeared repeatedly that fall, and once more in the spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense pain around a single eye that lasts for three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating pain around one eye that reaches its peak within minutes and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during episodes. Her definitive identification came in 2002 at a national hospital.

Still, the failure to plan daily activities around unpredictable pain took its effect. She especially hated 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 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 winning tickets for a major concert, only to have an episode inside a portable toilet.

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

Historical healing texts suggest bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally recognised by international headache committees 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 head. Prominent experts in diagnosing the condition explain this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major journal, 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.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his complaints.

Neurologists say delays in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her pain. She thinks dentists still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen therapy and/or a specific medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The length of the bout determines the treatment.” Short bouts with occasional attacks are managed with acute therapy only. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the head where the pain is that decreases nerve signals.

The national guidance need updating to reflect a