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It began on a overcast weekday morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. This was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I left a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.

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

Approximately 1 in 1000 people are affected by the disorder, and males are more frequently affected. Cluster headaches usually start with sudden, excruciating agony around a single eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic bouts; others have continuous attacks, characterized by the lack of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were not in pain.

Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the bus home.

Her family often interpreted her attacks as drunken episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after moving, but often hid her condition. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Still, the failure to organize life around unpredictable attacks 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 family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms 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 facility.

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Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.

Historical healing records propose bizarre treatments for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.

In the late 1990s, scientists released the results of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such progress, diagnosis remains slow. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple operations before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A thorough patient history is essential: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked me through oxygen treatment and drugs until the episode eased.

National guidelines on management recommend that patients are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of some individuals.

But leading neurologists argue the guidance need updating to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Brief cycles with infrequent attacks are handled with abortive therapy alone. Longer or more intense periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the pain is that decreases nerve signals.

The national guidelines need updating to reflect a