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It was a overcast weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense pain bloomed behind my right eye. It was followed by quick shocks, like lightning bolts. As the school day progressed, the pain eased and then came back with greater force. Four times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took paracetamol, but the agony remained unbearable.

The attacks appeared frequently that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically begin with severe discomfort behind one eye that lasts up to three hours.

Approximately 1 in 1000 individuals suffer by the disorder, and males are more often affected. Cluster headaches typically start with sudden, severe agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are associated with tearing eyes, drooping eyelids or face sweating. I have the episodic form, which occurs in periodic bouts; others have chronic cluster headaches, defined by the lack of extended pain-free periods.

What connects sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like several causes, made things more intense. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

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

Still, the failure to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation 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 recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

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Headaches have been described across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent entity who attacked his victims' heads.

Historical healing records propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.

The disorder were only officially classified by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.

Despite such progress, diagnosis remains slow. One man's attacks began 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 eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, 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 molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was she who replied. I remember calling a support line during an bout in 2021; a reassuring advisor talked them through oxygen treatment and medication until the episode eased.

Official guidance on management recommend that patients are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the bouts of some people.

But consultant neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with infrequent attacks are managed with abortive therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The official guidance need revising to reflect a